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.

One Self-Advocate’s Journey To Redefine the Shoe Industry for People With Disabilities Reinforces a Point That My Dad Has Been Preaching for Years

In Tuesday’s blog post, I talked about a speech I heard this past weekend from a young man by the name of Matthew Walzer. His speech came at a perfect time in my life. As I said in the blog Tuesday, until this past weekend I had been lost and in a sort of never-ending fog. Since Matthew’s story impacted me so much, I thought I would share it and its similarity to a point my dad has been trying to get both me and my sister to appreciate for years. By the end of this piece, you will not only understand the great wisdom of my dad but also you will hopefully appreciate the tenacity Matthew showed in his effort to redefine sneakers for people with disabilities. In short, by the end of this piece, you will understand why I believe in the saying, “Attitude is altitude”. 

Every good story must start with a problem that the protagonist must face. Only this time, Matthew Walzer wasn’t writing fiction. Matthew was born with Cerebral Palsy. While some with Cerebral Palsy are wheelchair bound like myself, Matthew can mostly dress himself. The only problem is up until he decided to change it at the age of 16, he had a problem tying his shoes. Matthew would have to ask his parents to help finish dressing him. Matthew was not satisfied with this. He had dreams of going to college but was worried about being embarrassed, and who wouldn’t be embarrassed, by having their parents tie their shoes in college. What was Matthew to do? 

Being proactive and a forward-thinking individual, Matthew wrote a letter to one of the largest shoemakers in the world. He wrote to Nike explaining his dilemma and after years of development, Nike would come out with a slip-on sneaker which they called FlyEase. Matthew may not have been aware of how his letter would change not only his life but the disability community as a whole, however, his impact is much more than just a shoe. Matthew displays a drive and tenacity that most people wish they had. 

When I heard Matthew tell his story this past weekend at the Florida SAND conference, I was immediately struck by two things. The first thought was holy shit this kid has balls. The second thought was I used to be like that. What the hell happened to that Jason? I used to live by the saying “Fear nothing, Regret less” but compared to Matthew I was falling short. As I said in Tuesday’s blog, Matthew has inspired me to change that, but he has also done what my dad has tried to do for what seems like a lifetime. 

Many years ago my dad told me to not let my disability hold me back from doing anything. At the time, he did not use the phrase attitude is altitude but clearly, that is what he meant. Matthew and my dad are both wise beyond their years. They both understand that our lives are ours to live. They only will be as good or as bad as we let them be. I know I am posting this on a blog related to disability, but Matthew’s point goes far beyond having a disability. Yes, he was born with a disability but besides the fact that he uses crutches to get around you wouldn’t know it. 

The attitude that Matthew and my dad and for the most part, I have, is not very common anymore. But given the state of the world in some people’s opinion, that might make sense. I argue that the negativity and pessimism that we see in a large part of society today regardless of disability, race, gender, or economic status, only produces negative outcomes. If we as a society think negatively, we will not be satisfied with how things turn out. 

In closing, perhaps the epidemic of depression and suicide as well as a feeling of not having a social identity can be simply attributed to the way one looks at life. But I could be wrong. After all, I’m just a 37-year-old Quad who has Cerebral Palsy. However, I believe that what I lack in the physical department, I make up for in common sense. Anyway, just food for thought.

Jay

The Question Everyone Wants to Ask but is Afraid Too

First off, I must thank you guys for the continued support of this blog. It means the world to me. Second off, I’m writing this blog because several people have asked me that they are curious about the issue. There are multiple types of disabilities but they can be categorized in two ways: disabilities developed at birth or disabilities encountered later in life. My one friend who works with the disabled population indicated to me that this is a hot topic for debate and also got me thinking. I have a family member who is going through similar issues at this point in their life.

I myself was born with a disability. I have Cerebral Palsy and it is a neuromuscular disability. It is basically like I have the ability to do everything but my brain does not know how to send the signals to the appropriate muscle groups. Due to my circumstance, I have had a long while to adapt to challenges and I have never known what it’s like to walk, even without the assistance of a walker or another person. I have never known what it’s like to work out like an able-bodied person and come home and feel exhausted. I have never even known the simplest pleasures in life such as being able to tie my own shoe. However, this does not bother me because I don’t know what I am missing. I cannot speak for others but in my opinion, it is better to have a disability which limits your functioning from birth rather than experiences both sides of life. I say I cannot speak from personal experiences however I do have friends that have undergone this predicament. I find that these individuals can be categorized into two types of people.

When one has their physical independence suddenly taken away from them it is no doubt mentally training and frustrating. I cannot imagine how my one friend felt when they were just about to go to school for diving and then the next thing they know they found themselves in a wheelchair. They have adapted greatly to their new circumstance and they do not feel society owes them anything because they are not disabled. I know others that never come out of what I have terms “the grievance period.” As I’ve stated many times on this blog before. I go to a college which has a high incidence of people I wheelchairs. The number of people in wheelchairs is equally split among people that have had their disabilities since birth and people that have grown into their disabilities. 

Apart from accidents, the most common form of “growing into one” disability is an umbrella of 40 disabilities known as Muscular Dystrophy. There are several common forms of MD but most show themselves during the heart of adolescence. MD itself is a genetic disorder that is not controlled by the birthing process. These individuals are not often cut down at their prime. When social development is extremely fragile in key. So I cannot imagine having to deal with losing one’s physical ability as well as adapting to new social settings and interactions. However, I find individuals that have MD seem to have a better acceptance rate of their new circumstance than people that find themselves disabled due to accidents. As I’ve said above, there are exceptions to this rule but in my small segment of the world, this is what I have observed. Perhaps this can be attributed to the way the support system around the individuals deals with the new challenges. I find that acceptance of one’s obstacles has a great deal to do with personal strength but also support around them.

In closing, because I do not have a disability that I was born into I feel that I could never do what half the people I know in the circumstance do every day. I look up to my family member who is going through it right now. They are one of the strongest people I know and they’ve always been. This is why I know they will get through it. What I don’t understand is how they can say they look up to me because even though we are in the same physical predicament now the way we have both gotten there is completely different.

People have asked me if there was a cure for my disability, would I take it? My answer is not. I would not. At this point in my life, I am at a comfortable stage. I have developed a comfortable series of physical care routines and a comfortable way of dealing with my circumstances. I would not want to go back to being a two-year-old just to be able to walk, run, or jump. One thing I would like the ability to do is to wipe my own butt. Not because it’s an enjoyable task by any means but simply to gain a sense of privacy that is not available to me at this point. However, when I look back on it all I am left with this question...do I really have it all that bad? One, I did not lose anything. Two, if I was an alien looking down and saw someone in my predicament who was having things read to him, food fed to him, his bathroom needs to be taken care of, I would think to myself  “these must be the kings of the world!” that’s just my unique way of looking at it. Just some food for thought.

Question: For those who are able-bodied would you rather have it and lose it? Or not have it at all? You can comment