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.

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.