How To Have a Healthy and Long Lasting Relationship With Your Significant Other

Hello again, I hope that everyone who is reading this had a great weekend and enjoyed the posts from last week. 

On Friday, I wrote about privacy and setting boundaries when you have a disability. This post will examine boundaries also but this time from a different angle. In this piece, we will look at the idea that some people with disabilities tend to rarely find themselves in long-term relationships, because of their inexperience with romantic relationships sometimes they end up unknowingly losing themselves in the relationship and neglecting other parts of their life.  This piece will provide some helpful tips to ensure that any romantic relationship you have as well as the other relationships in your life are balanced.  

Anyone who either knows me or reads this blog regularly will be aware of the fact that I am now in a relationship with a little alien by the name of Samantha. What you may not know is Samantha is the first disabled person I have dated and my first long-term relationship since I was 18. My previous relationship lasted a few months so some might not even call it a long-term relationship. Either way, my relationship with Sam is the longest relationship I have had.  We have only been dating for a little over a year but it has been a wild ride in a very good way. I believe until recently we were still in the honeymoon phase, or at least I was.  This is not to say that we are still not learning about each other and growing together as a couple. 

For the first 13 months or so of our relationship, we would call each other every time we got a break in our day, and this was immensely enjoyable but for my part, it eventually turned into a routine rather than a vibrant conversation with someone I love where we had things to share with each other. That all changed after a conversation a couple months ago. 

One night instead of being nerds and reading the fourth Harry Potter which we have been doing for months…will we ever finish it? I’m hoping so but I will let you know when we do. Anyway, back to my point. One night the topic of our relationship came up. As I said on Friday, when you have people constantly around you, they observe certain things even if you do not know it or want them to. In our conversation, it came out that people in our lives were making comments about our relationship, and at the time I thought they were unfounded. However, looking back, maybe these comments were wiser than I realized. To summarize, many people said we both, but for the most part, I had changed. Upon hearing these comments, I immediately jumped the gun and reacted negatively. 

According to some, they felt that I was consumed with Sam. After taking a breath, Sam calmed me down. She made me realize that perhaps because I have not been in a long-term relationship I was going in full throttle, perhaps even a little too much. It’s funny how people closest to you give the best advice but they are the last ones we listen to. Anyway, as a result of that conversation Sam and I now talk once or twice a day so that we have something to talk about at the end of the day.

I found that our conversations were richer and not as forced as they were when we talked constantly. I am thankful for that. An added benefit of the change in communication style between the two of us is my personal growth. 

I am now developing better relationships with close friends, taking time for family and caregivers, and even getting back in touch with my spiritual side. I was raised Catholic but have drifted away from the Christian church, or for that matter, religion in general. Since I have been in a relationship with my alien, my faith has been reawakened, and I am slowly building upon it. For that, I must thank Sam. Even though I have been surrounded by religion my entire life, when you are forced or constantly reminded to find faith you quit looking for it but when faith finds you this is truly the way a relationship with God is supposed to develop. 

Along with my faith journey, since I have changed the communication style in my relationship, I have paid more attention to the opportunities life is providing me. Recently I have found a new passion for self-advocacy and as I mentioned last week, I have found my true purpose in life. On that topic, my sister pointed out to me that something I said in my blog post last Tuesday might have been misunderstood. 

In the blog, I wrote last Tuesday I mentioned it is my new passion to obtain a law degree in public policy and become a civil rights/public policy attorney. After talking to my sister, I realized that it may have sounded as if I was going to immediately pursue that goal and forget about everything else. The opposite is true. That is my end goal. For those who are curious to know I have a plan of action to get me to that eventual goal. In short, next March I intend to apply for a six-month program in which I will learn how to advocate for different legislative policies that affect people with disabilities in depth. Hopefully, this program will provide me with a foundation for my future goals.

In conclusion, in order to have a healthy fruitful, and most of all lasting relationship with a significant other I have learned that there is one key factor. This simply comes down to personal growth i.e.: having a life apart from your partner so that you can come together as a couple and enrich each other’s lives and grow together. 

I hope you have enjoyed this little bit of relationship advice from someone who is still learning. Having said that, please note the above blog and the advice given in it is just that. You don’t have to agree with what I said at all; if you do that’s great, if you don’t I respect that as well. Anyway, until tomorrow, I hope you have a good rest of the rest of your day.

Jay

When You Have a Disability, Is There Such a Thing As Privacy?

As humans, we crave interaction with others. Indeed. when we don’t have social interaction with other people, feelings of despair and loneliness can overwhelm us. However, in the age of social media have we gone too far? Every aspect of most people’s lives is available for consumption by others now. This may be a new concept to the majority of the world but for one segment of the population, I argue that a lack of privacy is not a new concept. Indeed, it may even be a bigger problem for people with disabilities than their able-bodied counterparts. 

Frequent readers of this blog know that I have a disability known as Cerebral Palsy. Cerebral Palsy, for my new readers, is a congenital disability that occurs at birth. It usually occurs during the delivery process; it is not genetic or at least there is no evidence that it is as of yet. There are many forms of Cerebral Palsy and it can affect people in a variety of ways. Some people with Cerebral Palsy have a slight limp when walking, others use a wheelchair for some things but are semi-self-sufficient. Finally, there are severe cases like mine, where the individual is confined to a wheelchair and requires physical assistance for most activities of daily living (ADLs). Cerebral Palsy does not only affect people physically. Indeed some, unlike myself are intellectually impaired. This is not to say those who are intellectually impaired live less of a life, I’m just recognizing the fact that I am not.

 I am aware of how involved other people are in my life, to put it bluntly: I can’t eat, drink, shower, or even use the toilet without the assistance of someone else. Hence the question in the title of this blog. Is there such a thing as privacy when you have a disability? I argue that when you have a disability it is up to you to demand privacy whenever possible. The rest of this post will hopefully provide you the reader, with a new understanding and perspective as to why I feel the way I do.

Before I go much further, let me address the elephant in the room that I know some of you are thinking about. When you first glanced at the title of the post you probably thought it was going to be primarily about sex and intimacy. Yes, that is part of it, but not all of it. I am blessed enough to have, if I may be so bold as to embarrass her for a second, an extremely gorgeous and sexy little alien girlfriend. I count my blessings every day. I consider it a blessing that she not only puts up with my sarcasm and snarkiness but also my complete nerdiness as well as my overly emotional girly side at times. However, this is not the only way in which I am blessed; I also consider it a blessing that I even have a girlfriend. I am aware that most people with disabilities (I know I’m making a sweeping generalization) are single for one reason or another. Some of it is by choice but I believe, and now here comes the annoying opinion again, that most people with disabilities are single because most of the world sees people with disabilities as undatable. This is coming from experience. Yes, even someone with a disability like mine can be guilty of this type of thinking.

Now that I am done doting on and embarrassing my girlfriend, let me get back to my main point about intimacy, sex, and privacy. Some parents who read this next part may not agree with it because they may have a different view on physical intimacy than I do. You have that right and if you choose to, please skip over this part of the post and move on to the non-intimacy section of the article. I believe in every relationship whether it is one that is just beginning or one that spans multiple decades, there is a need and desire for intimacy both emotional, spiritual, and physical. When you have a disability, however, that may look different than the “norm”.  When you have people all around you 24/7 or close to it, it is nearly impossible to have a “private” conversation even if you put in headphones and talk on the phone or video chat while you are apart, or when you are together shutting the door, problems still arise. 

Caregivers or support personnel or whatever you choose to call them are always around and walls are only so thin. Whether you are having a normal conversation or a more risqué one, unfortunately, whether they intend to or not, other people will overhear your conversation. That being said, it is common for all of us disabled or otherwise, whether we comment or not, to form judgments about what we hear and fill in the missing pieces. 

If that wasn’t bad enough, say a couple reaches that stage where they are ready for physical intimacy and they require caregivers, another question arises. How to involve or not involve help? Everyone deserves physical intimacy at some point in their lives, the question is what do you do when you can’t do certain things on your own? Do you not do them?  It is a sticky question that I don’t think many people are asking. “That dreaded opinion again”. Perhaps the reason they don’t ask such questions is because they don’t see disabled individuals as “capable” of being physically intimate. 

Anyway, moving on from the uncomfortable section of this post. As I said earlier, privacy is much more involved than just privacy in a relationship. How does one maintain their dignity if they are “exposing themselves” and every detail of their lives to caregivers or family members? There are some in my life who have recently said to me that there is no such thing as privacy when you have a disability. It took me a while, but I have come to partially agree with them. I argue that even though one may have family or caregivers extremely involved in their lives, it falls on the person with the disability to create boundaries. This could be something as simple as asking the people in your life to announce their presence in some way; knock on the door before they enter the room or give a verbal signal. Finally, another example of a boundary could be not having people speak for you when you have a disability as they often do (these are only two examples of many).

In conclusion, I believe that privacy is relative when you have a disability. Some aspects of your physical care cannot possibly remain private, but there are aspects of your life whereby taking the proper initiative the person with the disability can maintain or restore some of their privacy. 

Anyway, this has been a long blog and before I overdo it and lose the impact of what you have read, I will say good day. I hope you have enjoyed not only this blog but the other blogs you have read this week. More to come on Monday.

Setting Boundaries; How Do You Know the Difference Between Someone Being Friendly and Genuine Friendship When You Have a Disability?

It has been a few months since my last blog. However, with it being a new year, what better time than now to hit the ground running with a new sense of purpose and passion? It has always fascinated me how humans can become so disenchanted with life that we reach extremely dark places. To be honest, that’s where I have been the last few months, although it may not seem that way to outsiders. Depression rears its head in the most positive and happy people. You may ask what do I have to be depressed about? To answer without unloading every single problem I face, let’s just say there are quite a few things about my life that would depress most people. How you overcome the difficult times you face defines you as a person. We often require the help and advice of our friends, colleagues, and family to reach the other side of that “dark place.” Lucky for me, I have an amazing group of people that make up the support team that helps me navigate through my “dark place.”

Recently, I was having a conversation with one of those people when she brought up a topic that I believe does not get discussed the way it should be in the disability community. Although oftentimes, we have to remind others disabled people are just like everyone else. For the purpose of this article/blog, I am not referring to the differences our disabilities present physically or, in some cases cognitively, rather I am simply referring to the idea that, like the rest of humanity, disabled people want and deserve to experience the joy and happiness that come with genuine friendship. Bearing this in mind, I will use the rest of this piece to rather provocatively argue that although disabled people may not mean to, sometimes, in our pursuit of genuine friendship, we shoot ourselves in the proverbial foot. Don’t agree? You have the right to feel that way, but if you indulge me, here are a few examples to support my assertion.

I use personal care services to perform my everyday ADLs. This means I am with a caregiver in a one-on-one situation most of the time. The caregivers do mostly everything for me. They help me in the restroom, and until recently, they help me eat all the time. (I now occasionally, depending on what I am eating, will use adaptive utensils,) as well as many other activities throughout the day. Naturally, when people spend so much time together, they will become close on some level. What I believe happens to people with disabilities is that they believe that every caregiver they have will be a friend for life. Now I am not saying that caregivers don’t fall into that category by any means. I myself have a handful of caregivers that either work for me now or have worked for me in the past that I consider “genuine friends.” I am simply arguing that because our desire to make friends is so strong that sometimes we mistake someone’s being friendly forNeeds when you read it again, some time will friendship. Sometimes we’ll forget that boundaries must be established between us and our PCA. You must remember that it is incredibly rare in life to have true friends, either in a professional setting or otherwise. The few true friendships we are lucky enough to develop throughout life must be cherished and treated as special. Regarding people with disabilities, we must set boundaries with our PCAS and realize that most of them will not become lifelong friends.

There is yet another area where people with disabilities sometimes forget about the rarity of true friendship. I believe because a large portion of people with disabilities did not grow up with the same social opportunities as our able-bodied counterparts, it is hard for us to navigate the social structure of society. We often get so attached to people that we do not realize it is natural for people to come in and out of our life. That being said, it is unfair for us as people with disabilities to expect every friend we make to talk to us regularly. I have had to learn this the hard way. I now understand that life happens. Just because you don’t talk to someone regularly does not mean they don’t care for you.

In closing, I would like to say that the views expressed in this blog are my own. They may or may not reflect the views of other individuals with disabilities. As a final thought, I know that I have grown a lot, but I also know that to fully grow as a person, my journey will never stop.

Until next time…

Jason

Definition of Terms

1. ADLs-Activities of Daily living

2. PCA (Personal Care Assistant)

Lets Get Intimate

CONTENT WARNING! READER DISCRETION STRONGLY ADVISED.

So something is bugging me. I’ve been watching a lot of political television lately, and a lot of the conversation has been about how my generation does not know how to communicate because of their reliance on technology. This is an interesting topic, but it also got me thinking about other issues and the way my generation views them.

As someone in his late twenties, I find myself every once in awhile craving stability and a family. I feel this is a natural thought process for anybody who is on the other side of 25. The only difference with me is that I am disabled. Disability and intimacy don’t usually go together. Perhaps that is why I feel the need to write this blog.

I’ve written a lot about funny stuff, serious stuff, but never an issue that affects me so deeply. What I am about to say may come off as controversial or different, so if you choose not to read further I understand. Understand however that if you do read further, you are going to hear some things you are not used to.

In other blogs, I have written that disability is seen as strange because it is different. The relationship arena and specifically the sexual arena are no different for people with disabilities. Most people have a preconceived notion of what beauty is. Most often it is someone skinny, fit, athletic, very rarely do people with disabilities come into the attractive conversation. When people with disabilities present themselves as dressed to the nines, people don’t take it, as they should. They are taken aback that “these people” even care about their appearance. However physical appearance is not the only problem that disabled people face in the relationship and sexual arena. Some disabled people yes indeed cannot help their appearance because of certain deformities, so they are already at a disadvantage. These deformities aside, there are much more fundamental barriers that disabled people face in these two areas. 

Before I go into these issues and my opinions on them, please watch the following video on disability uncensored. It is a great documentary that is about fifteen minutes long. It will better provide a background for the rest of this blog. http://www.youtube.com/watch?v=qA020ShNQr8

Although the documentary has a more cavalier attitude about sex than I do, it brings up a good point. Disabled people, myself included are often seen as not having intimate feelings and desires. I cannot count the number of times that I have been out with somebody on an actual date and I get one of the following reactions from people. They ask either, “are you two related?” or “is she working for you?” In the documentary I cited, an interesting point is brought up. When people desexualize people with disabilities it is almost yet another way to treat us as second-class citizens. I am not saying that I go out and sleep with anybody, but I have desires just like anybody else.

There is an even greater problem though, and people with disabilities themselves often perpetuate the problem. If by chance someone with a severe disability happens to find someone who would consider dating him or her, it often never happens. Why is this? I’m only 27 and have not lived life all the way through yet, however with what I have seen I have come to this conclusion. It often never happens because of a fundamental belief on the part of both parties that the boyfriend or girlfriend would have to take care of the disabled person. Who wants that? Nobody wants to be a caregiver; they want a partner, someone they can confide in and lean on, and someone who can care for them. Disabled people are not often seen as being capable of doing this because they are seen as helpless.  We are not. We are capable of many things, but we shoot ourselves in the foot more often than not.

As I said in my the last blog, disabled people set the bar so low for themselves that they allow themselves to be viewed as helpless. Sometimes they even believe this themselves. As this blog has tried to advocate in the past, we are only as helpless as we make ourselves. This holds true in the sexual and relationship arena as well. If we go into it believing that we're going to have a caregiver who also feels for us in an intimate way, we are setting ourselves up for failure. Able-bodied people need to realize something as well. A relationship is not all about the physical. It is about communication. To be blunt intimacy is not often always about penis and vagina intercourse but can be as simple as human touch or as complex as lovemaking. It is all dependent on the couple. One thing that has to change is the lack of communication in relationships, and this I fear is why disabled people have such a hard time nowadays.

Now a day everything is about instant gratification. You cant go five minutes without seeing someone on their phone or updating their Facebook status. For a successful relationship we need to get back to the basics of love. No maybe we don’t need to go to Texas, but we need to get back to the basics of human interaction. Most importantly however, we need to stop selling relationships as a one size fits all thing. People need to understand that judging someone based on their obstacles only causes you to lose out on something great. 

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.

The Elephant in the Room

Okay, so it’s been a few days. I’ve been busy, and I finally submitted the first round screenplay to the NYC Midnight Screenwriting Challenge along with promoting my friend’s show “My Gimpy Life.” Teal and her team are interviewing five candidates this week to fulfill the position of Social Media Coordinator, hopefully. Good luck to my friend Jessica Rose who has an interview today with MGL.

       Over the last couple of days, during my hiatus from blogging, a significant issue has arisen in my life, which has inspired me to write this blog. I have had a couple of hiccups with my aide care. When these issues first occurred, I wanted to blog, but I didn’t because I would have come across as bitter and angry if I had. Now I can blog about it because I am removed from the situation. I am not upset and angry but just disappointed in my generation and their dealings with others. This blog has not only addressed disability issues, but it will handle a generational issue as well.

       We are all familiar with the phrase, “Actions speak louder than words,” but do we ever really pay attention to what that means? Although I have not held a paying job at this point in my life, I am pretty intelligent, and I understand the value of a dollar. I also have dealt with personal care workers for quite a while. And I know that this type of employment is unlike any other profession. It differs from any other profession in many ways.

One of which is expected while others are not. That outside of the unique situation that is the job of personal care can see a misunderstanding. The obvious way that aide care is different from any other profession is that there is no privacy. The most intimate functions are shared between two people. When a person has to use the bathroom, they need other people. When a person has an accident, they need other people. This, in and of itself, can both cause some incredibly funny moments. Still, it can also lead to the development of another way in which personal care is different from other forms of employment. I have been warned against it many times, but I find it impossible not to become friends with the person or persons who take care of me. When somebody is intimate with your privates or puke, you have to have goofy conversations to offset the awkwardness. Eventually, the aide usually quits, or you develop a deep bond and understanding because not everyone can relate to what you two are going through. This closeness and friendship often cause one to forget a very important element of the aide care job. It is indeed a job, and your client is often extremely dependent on you. In my case, for example, to put in a funny way, I am like a giant baby with a brain and a sense of humor.
       Many disabled people would not like this analogy, but if they were honest with themselves, they would find an accurate description of our situation. As for me, for example, I am fully dependent on others for everything. If there is a snot booger coming out of my nose and I feel it dripping down into my mouth, I have to ask others to wipe it. Some of these tasks may gross the caregiver out, but if they sign up for this job, then that is what they signed up for. Except for my awesome finger and its shitty driving skills, I can’t move. I am also physically dependent on people to get me in and out of bed. Other disabled people are in similar situations. Some caregivers have an interesting perspective on the fact that we are dependent on them. Some aides view it as doing me a “favor.” Yes, I admit that I would be screwed without help but let me give a quick English lesson. The word “favor” means doing something and not getting something in return. Hence, aide care is not a favor to any disabled person or me because aide care workers draw a paycheck!

It might be a shitty paycheck, but it’s still a paycheck. If one were in the real world and refused to do specific duties, their boss would not put up with it. However, I included, along with other disabled people, have to put up with it. Why is this, you might ask? Simply because we are so dependent on people, some give and take in aide care relationships. Still, my generation does not understand the difference between working for a friend and working in general. Yes, you are friends with your clients in most cases but don’t abuse the friendship and produce a substandard care level just because you know we have to deal with it. Or, as a former friend of mine said to me (when he was training someone on how to be a personal caregiver), “You should always take care of a person as if you’re going to be in their shoes tomorrow.”

Initially, after the last aide care bump in the road, I have to say that I was bitter and angry, and I had a poor pitiful “me” moment. However, that didn’t get me anywhere. I soon realized that this would be a part of my life, not a fun part, but a part of my life nonetheless. I also soon realized that I was angry at the situation as much as I was mad with my generation. For the most part, in my opinion, my age is so self-absorbed, and altruism is a word most do not know. They put no stock into being on time and no value into a commitment. This does not only apply when it comes to personal care purposes for entirely dependent people. I’ve found this applies to other areas of life as well.

When this occurs, it causes significant issues for several reasons. Apart from the unreliability that results from people not taking responsibility seriously, it also creates other problems. I live independently from my parents, and they live six hours away, and they freak out every time I have an aide care issue. This is understandable, but freaking out does not do anything, and it only exacerbates the problem. Many people ask me why I tell them about my issues. I tell them because I need someone to vent to before I drive my chair straight through a wall. However, telling them is both a positive and a negative thing. Telling them allows me to get out of my frustration, but it also allows them to respond with the following. “Well, you shouldn’t have to live that way!” or something similar to that.

I agree with their romantic view, but that is not my reality. I should not live that way, but I do, and for a couple of days after the latest incident, I wondered how I was going to deal with this reality of my life. During this period, I ended up getting miffed at my generation. Now one might ask, how do I connect the problems I’m having with a personal care issue into a generational commentary on the sad state of affairs today. Well, the only answer I have for that is I’ve always been an old soul. I think way too much, and I have a unique way of looking at things. This example is a perfect one. With my aide care situation, I realize something. Not all my aides were acting that way. It got me thinking since when did people not value their word or commitment?

As I’ve stated before, I feel that my generation is the most self-absorbed and selfish generation that I’ve ever met. Altruism was not a word that we learned, and we are more concerned with what other people think along with what other people are doing compared to what we should be doing. How does this relate to aide care? Simply put, some of those who are around my age do not view this as a job because they are close to me in age. They view it as being able to hang out with somebody and get paid. A key example, I’ve had aides who will “refuse to do certain tasks because I have other shifts that can do it for me.” Or they are tired or took the job because they needed time to sleep—or sometimes even money. They’ve also said that other shifts can do it for me in general. This has occurred in Edinboro, Pennsylvania, and when I was living at St. Andrew’s in North Carolina.

This is not only the dumbest philosophy that I’ve ever heard, but people often forget that one would not be able to pick and choose what they do at particular jobs in the real world. You can either do something all the way or not at all. There’s no room for someone who does their job half-assed. When you pick and choose what you desire to do in a personal care position, it can cause problems, and these are not easily fixable.

Often it is hard for the person being “refused” to say anything because they don’t want to lose the warm body, i.e., the person who’s helping them, and their support system often doesn’t understand this. Even their parents or their service coordinator say that the caregiver should not dictate the care, and in an ideal world, this is what one desires. However, if a caregiver decides to show up several hours late, nothing can be done about it. I’m not speaking about any caregivers in particular because I’ve had several that have done this.

Before I continue, a quick aside to show that I understand things from the caregiver’s perspective. When you get into private one-on-one the care, I am sure it is different than working for thirteen people or even forty people where you have a break from the individual, and you have other co-workers to vent to. I also believe that it is not right that caregivers should be at a client’s beck and call. I admit I have been guilty of this. I am not dodging my responsibility at all. I feel that a majority of disabled people (as I’ve said myself included, and earlier portions of my life) have the belief that the aide is there to serve them. This is not the case.

The aide is there to help them. That being said, I come to my next point. I also believe that anyone who does not understand the dynamics of the relationship between a caregiver and a client has no right to comment about what is going on between them regarding how well a particular aide is doing their job. Yes, I do believe that aides are often underappreciated and underpaid, and this needs to change. Like I said before, though, both parties have responsibilities to create a healthy client/aide relationship. And a note to all prospective aides, do not use this as just a stepping stone job because it is not a job one can take lightly! It is not like working at McDonald’s. If you are late, give your client the courtesy of informing them because they rely on you for everything. At this point, I’m not just talking about me. I know one person in particular who was stuck in bed for several days because she had no one. Again, back to the disappointment that I have in my generation.

My generation seems to think that everything should revolve around them. Altruism and responsibility are words of a foreign language to most individuals in my age, but the most unheard concept in my generation is a “promise” that is kept. A lot of people promise someone the world, but how many of them follow through? Not very many. Since when did our word become worthless? It is okay to tell someone, “No, I don’t think I can help.” in that situation. It is okay to tell someone how you feel. Not only is my generation skittish about being honest with their peers, but also, if their peer is in some form or another disabled, then this skittishness is magnified.

I am not expecting society to change overnight, but honesty must exist in the field of aide care. If you know you are not going to fulfill duties, you need to tell someone. Whether it is either about not being able to get there on time physically or if your client is asking you to do something that you don’t want to do, then you need to either discuss it with them or if it an essential piece of the aide care description then re-look at your job description. If you are uncomfortable with your duties, then get out of the aide care business!

A final note to my parents and any other parents of disabled people who might be reading this. The realities presented in this blog are much different than I’m sure the reality that you have envisioned for me, but they are the realities that I live with. People are not going to change overnight, but it is only through communication and action that change will occur. No one’s life is silky smooth. You guys only freak out because my current goals seem a lot larger than yours. Just because you freak out about them doesn’t mean it fixes the situation. Eventually, it might make me talk about the situation less to you. Not because I do not love you and your opinion but simply because constantly reminding of how my life should work out in a caregiving sense does not help me come up with solutions for what is occurring in my life.

In closing, I don’t know who will read this blog and what emotions it will inspire in people. I thought it needed to be written to discuss significant elephants in the room that disabled people and their caregivers often ignore.

 

 

      

 

 

We’re Really Not That Different

It’s been a while since I’ve written. I’ve been busy and am currently entered in the Screenwriting Challenge 2013 presented by NYC Midnight. So I’ve been bouncing around ideas for that. However, I watched a music video today that got me thinking about an old friend. In turn, that got me thinking about the idea of disability and relationships. For this blog, relationships are not talking about friendships but relationships on a romantic level.

       I ended up watching Rascal Flatts “What Hurts the Most,” which is a good video, and it got me thinking about someone I used to be close to. In this blog, I will refer to her merely as KB. Those who know me will know the initials, but since this is being read about the world, I want to protect her anonymity a little bit. Anyway, what hurts the most got me thinking about all that was left unsaid between me and this individual and the personal walls and hells I’ve put myself through. Once I was done having a moment of self-pity, it got me thinking about a larger concept about disabilities and relationships. Before one continues, I feel it is essential to place the following video here: I got the title for my blog. http://www.youtube.com/watch?v=-r9KAU-RKu4
As my one friend said, it is a relatively progressive video which shows that people of all shape, sizes, race, and beliefs at their core all possess fundamental needs and desires. That being said, there is a message that I need to espouse.

       As I’ve termed them, “exceptionalities” are no different, but when you have a physical exceptionality, it seems as if you struggle more to find a healthy relationship. This next piece of the blog may be a little uncomfortable to some readers, but it is the reality of my life and those similar to me.

       A certain amount of physical contact, whether sexual or otherwise, is necessary for any healthy relationship because words can only communicate so much. Sorry to keep referring back to music in this blog, but it is like the one band known as Extreme with their song More Than Words in which the song says, “What would you say if I took those words away?” http://www.youtube.com/watch?v=UrIiLvg58SY

They emphasize that words can only do so much. Physical contact is necessary. This is why I hold the following belief, and I also believe many others who are disabled like I think that it is tough to date somebody who is more disabled than you if you are disabled. It may not make sense to one who does not understand the dynamics but let me give an example. If I were confined to a power wheelchair and the person I am dating is also confined to a power wheelchair, it is tough to lean over and give them a hug or kiss. Some individuals overcome these obstacles, but with my limited mobility, I have determined that it would be impossible for me to date somebody as disabled as I am. Going along with this, I often find myself attracted to non-disabled individuals.

       No, I do not know what it’s like to be able-bodied at all, but I do know what it’s like to be a 20 something individual in my generation. It appears as if a majority of my age, whether male or female, is looking for a quick fix hookup type scenario. As a disabled person, I have needs as well, but I do not view sex the way my generation views it, but I acknowledge that even though I am physically disabled, I do have desires. One will find that if they ask a majority of disabled individuals whether they view sex as a casual thing or not, they will admit that they have strong sexual desires, perhaps stronger than those of their non-disabled friends. I cannot explain it, but this is just what I have experienced. That being said, there is a common problem when one has a physical disability. We often end up being the emotional boyfriend or girlfriend to someone rather than their actual significant other.

       What do I mean by emotional significant other? I have had many friends in my life, and I know other physical people who have also been in this situation. Where are you in friendship with somebody of the opposite sex? In the beginning, you feel no attraction to them because, unlike popular belief, we do not want to date everyone we are surrounded by if we have a disability. However, as the relationship grows, they find comfort in you as a disabled person because of your perspective on life and your way of looking at things, and they will come to you with their problems rather than their significant other. This, in and of itself, would not be a problem except that disabled people are human too, and eventually, feelings will develop in some cases. When this does happen: I will use an example from my own life but protect her anonymity; we will call her Cristina. Cristina and I were friends my sophomore and junior year of Undergrad. She started working for me as a part of my homework aide staff, and quickly we saw that we were going to get along. We started hanging out more outside the work environment. When you work with somebody constantly, as near as I do with all the people who help me, you will see sides of them that they don’t show the rest of the world.

Everyone has bad days, and everyone needs someone to listen to. Well, this occurred with Cristina. She was having relationship problems, and I was a good friend, or so I thought until one day she said to me, “You would be the perfect boyfriend except you’re in a power chair. I don’t know if I could handle it.” This is a legitimate concern, but I had no attraction to her, so I blew it off. As the days and weeks went by, however, the interest began to develop. Eventually, we revisited the conversation, and I said, “A while ago, you said I would be the perfect boyfriend except for the fact I am in a chair. What did you mean?” She replied with one of the most hurtful friends that a friend has ever said to me, “I don’t know that I could be with you because you’re in a chair. It has nothing to do with you. It’s just your chair.”

       First off, that doesn’t even make sense because of the chair; I may not like it is a part of who I am. If you cannot accept all of someone, how can you possibly be with them? Second off, I have heard people equated not like women of color, and it may be the same, but I do not see it that way. I see it as “I like you, but there’s something wrong with you, and if you could fix it, you would be perfect!” That comment from Cristina sent me into a deep reflective thought period. Or at least that’s the politically correct term for it. It sent me into a dark period where I had issues accepting who I was and contemplated suicide. Not cool, but it helped in the end. To end the Cristina story, let me say we remained friends for a couple of months longer, and she thought she could handle it, so she led me on. She liked the attention I gave her but was too afraid to hurt my feelings to say that it wouldn’t happen. I lost a good friend of mine Sarah Thompson over this. I should have listened to her, and this is my apology to her. I hope she can forgive me.  Back to my point, though. Persons with disabilities find someone that they are attracted to, and the attraction is stronger because not a lot of people give persons with disabilities the time of day in that department. Sad, but true.

 

       The Cristina example was to illustrate what I’m about to say. Relationships with persons with disabilities or exceptionalities are not that different. Still, they do not occur very often because of two reasons: one being the able-bodied object of affection is afraid of something or another, mostly having to take care of the individual instead then become a partner or two that the disabled person’s expectations of their partner.

       There is a small percentage of physically disabled and power chair bound people that ruin it for the rest of us. They expect the person they are with to take care of their every need. This means both physical, aka sexually, and physical, aka non-sexually. Persons with disabilities that small portion anyway sees their partner as a full-time caregiver and not a partner. This is what society has ingrained into abled-bodied persons’ subconscious that it will be this way. I am here to tell you that it will not.

       If a person with a physical disability who is either bound to a manual wheelchair or a power wheelchair truly cares about an individual, then they will not let you perform their personal care tasks whenever necessary. We are not that different from you. We laugh, cry, dream, hurt, we want, we love, and fear. The only thing that makes us different is our physical needs, and it is not your job as a significant other to deal with those physical needs.

       I know this blog will not change society’s perception overnight or relationships with persons having severe disabilities and non-disabled people. However, it is an issue that needs to be discussed and brought to light. We cannot pretend that disabled people are not human, and we cannot pretend that attractions do not occur. It is only through discussion and frank conversation such as this one that a few souls will change reality for the rest of us. In closing, I must say that I do look up to those non-disabled people, i.e., Kayte Fry, who, at one point or another in their lives, looked past someone’s physical presence and found the human inside their soul. Although we do not speak anymore, Kayte and I were not directly involved with your relationship with this person; I am eternally grateful to you for realizing that we are not all that different.

 

Footnotes:  

1.) Collin Raye “Not That Different” http://www.youtube.com/watch?v=-r9KAU-RKu4

2.) Extreme’s song “More Than Words”  http://www.youtube.com/watch?v=UrIiLvg58SY