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Personal Space: an invisible disability

The worst part about being disabled for me may surprise you.  In a previous post I invited you to share your thoughts about disability. (See:  The Worst Part of Being Disabled)

I face numerous frustrating challenges on a daily basis. I'm constantly dependent on others. I need help bathing and dressing. I can't drive, cook, hold a book or feed myself. I rely on family, employees, technology and the goodwill of others. Some days it's frustrating, but I've learned through experience how to manage all this help.

Other frustrations are attitudinal barriers. Today I live very comfortably and have a high family income. I'm an entrepreneur, but not because of my unquenchable desire to build businesses, but because very few companies would be willing to give me a job. I made the decision more than 15 years ago that I could build a business easier than I could find a job, so that's what I did.

My single biggest frustration however isn't getting the help I need or overcoming prejudice. Surprisingly it's much simpler, yet more complex.



I'm a sexual being.

We all are sexual beings from the moment we are born until the moment we die. Sigmund Freud suggested that sexuality was the primary motivation of everything we do on Earth.

Being a sexual person has very little to do with intercourse, or the pursuit thereof. It has to do with the way we see ourselves, and the way others perceive us. It's eye contact across a crowded room. It's brushing against someone on a subway. It's holding hands in a restaurant. It's making love in the grass under the stars.

My biggest frustration is that my disability prevents me from participating in this complex dance in the same way as others.

Everyone has personal space. Psychologists tell us it's about 18 inches for Americans. (Europeans accept a smaller personal space, while Arabic and Asian cultures expect greater personal space.) Personal space is an invisible force field around us. When another person enters this space, our comfort level is influenced by that person.

A stranger brushing against on a city street you may make you feel uncomfortable or defensive, even if it was accidental and innocent.  Conversely, a lover wrapping their arms around you from behind can be instantly soothing and even stimulating.

Society, culture, sexual identity and our own self-confidence influence these reactions in amazing ways.

I see it as a dance. You wake up in the morning. Do you take time to snuggle with your spouse, or pop out of bed with a quick peck on the cheek? Do you keep the door open in your own bathroom, or do you require more privacy? Do you squeeze into a crowded elevator, or wait for the next ride? Do you shake hands differently in a job interview? A work colleague has a good day; do you celebrate with a hug or a pat on the back? A football player will pat another man on the behind in front of 60,000 people, but probably wouldn't in the locker room. An attractive server in a restaurant will touch someone's shoulder, smile and make eye contact because flirting may lead to a bigger tip. Your personal space may shrink dramatically under the influence of alcohol.

All day, every day we move through the world dancing with others, testing the limits of our own personal space as well as that of the people around us.

The worst part about being disabled for me is that I don't get to participate in this dance in the same way as others. People perceive my personal space as much larger. I walk through the mall, and the crowd takes a wide berth around me. Mothers pull children aside when they see me coming.

People don't touch me. We take cues around touching from others. A pat on the back, platonic hugs, or brushing against someone intimately means that they are open to reciprocal touching. Each person you meet influences your personal space, and you influence theirs.

I'm someone who enjoys physical contact. I'm comfortable in my own skin. Others, however, see my physical space as larger. Friends don't hug; colleagues don't shake hands.

Part of this is my stature. I'm sitting all the time, so I have difficulty in public situations where people are standing. People don't know how to shake my hand. Where someone may put their hand on your back, turns into a pat on my head. I have conversations looking upward, rather than eye to eye.

Part of it is the chrome. Wheelchairs are made of cold metal. Touching a wheelchair doesn't feel like touching a person, although it's an extension of my body.

I can't touch you. I can't raise my arms to offer a hug. I won't offer a handshake. I can't kiss you on the cheek without your participation. I can't even make an awkward flirtatious gesture to someone I find attractive. Because of that, people perceive that this type of touching is unwanted. That couldn't be further from the truth. In reality, because I can't do these things it makes them even more welcome when they happened to me.

The worst part about my disability is the vacuum of physical contact in which I live. It is invisible. My personal space, regardless of how I feel, is larger and penetrated less often than others.

I feel like I'm not invited to the dance.

Comments

  1. I find your article at once surprising and not. I tend to be the sort of person who is a non-toucher by nature. Except for the people who are really close to me (and this really only includes my husband and son, not other family) I don't want people touching me. I'm not a hugger, hand shaker, back patter, etc. But that's MY choice. I can see where having that choice taken away from you, especially if you would normally naturally be the sort of person who would enjoy that sort of thing, could be damaging to the psyche.

    Strangely, my initial gut reaction to reading what you wrote was "I want to hug him, or touch his arm or shoulder or kiss his cheek." And I'm the big non-toucher! I'm more surprised by my reaction to your article than I am by the article itself. I normally assume (or sometimes wish, with more affectionate people) that people have the same physical boundary around themselves that I do and react accordingly to give them space. My reaction upon seeing someone in a wheelchair is to give them a wide berth not because I'm put off or disturbed, but because I assume the wheelchair is an extension of them and I shouldn't intrude on that space.

    Damnit, Jason. Now I have the urge to go out and touch people in wheelchairs. You're going to get me arrested! ;)

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  2. Jason,

    Thank you so much for sharing your experience with me (and others). This is so important to raise people's awareness because although I consider myself inclusive and empathetic, Ive never really thought about the physical isolation that comes with a wheelchair.

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  3. Sharon, no need for molestation. :-) Again, some people in wheelchairs probably prefer not being touched. The key is to find that personal space bubble with the person as an individual rather than presuming.

    Juliet, I've heard about physical isolation not only of disabled people, but senior citizens and people struggling with obesity as well. It's clear that physical isolation can be connected with depression among these groups of people.

    Thank you both for your comments.

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  4. I'm, of course, teasing. I wouldn't ever presume to encroach on someone else's personal space unless they indicated that it was desired. Or I'd had a few drinks. ;)

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  5. Next time I see you, you'll be getting a giant hug! (Of course I will have to hug Kristie first, you know, she's my girl). Apologies in advance if I am sweaty and have coffee breath! Thanks for your courage in sharing this!

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  6. Anonymous9:33:00 AM

    Jason, Thx for sharing this perspective. It's not something that I've thought of before, the daily bump and grind (literally) and physical interaction with strangers. I love my personal space, but it's the CHOICE of personal space that I love and I hadn't truly realized that until reading your article. It definitely will give me pause when dealing with others. I do know that all people handle their specific disability differently. I once tried to hold open a door for a man that was in a wheel chair and carrying a large package. He was obviously offened at my offer and told me he could do it himself. I simply smiled and told him that I had no doubt and that if I had a large package I'm sure he'd do the same for me. He eased up when he realized I wasn't doing it out of pity but out of consideration. Because I'm that person. I hold doors open for people all the time. It had not occured to me that a disabled person my be offended by my gesture. So, desired physical interaction never crossed my mind. I love your articles and your style of writing.

    Once again.. sending you a long distance (hug) :-)

    Only posting as anonymous b/c I don't have an account with the other stuff.. you know I'm technologically challenged! lol

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  7. Anonymous10:29:00 AM

    I really love this article!!! I think it's amazing how optimistic you are about your disabilities... if it were I in that position I often wonder if my personality would be different, if I would be bitter. I know everyone has their days when feeling down but I know we all definatly take for granted all the things most of us can just get up and do without even thinking about it. For the most part I'm normally a hugger when it comes to friends and family, when it comes to people I don't know that well I guess just depends on the situation but I'm a very compastionate person! Being 24 years old I still give my grandparents a hug and a kiss everytime I see them....thats just who I am. I feel like after reading this article I will next time ask myself "has that person had a hug or a pat on the back today" and depending on the situation maybe I can be that person to make someones day a little brighter :)

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  8. Siew Pheng Tung6:02:00 PM

    Jason,
    I remember the first time I was introduced to you by your father... well your father did not know my husband and I but we approached him because he is a famous man and we are one of the early adopters of CQA, so we have to meet him. I got to admit that I felt awkward stretching my hand out to shake yours. I am an introvert and by definition introverts fear rejection as we never know how others perceive us. I was afraid that you would reject me! So now that we know that you welcome the intrusion, you better watch it, the next time we meet you, we will be in your personal space!

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  9. Wow Jason. You have done an excellent job explaining something I'd never thought about either. I'm laughing at Sharon b/c her comment could just as easily be mine. I'm not a toucher & I also automatically give a wider birth to a chair b/c I assume it's needed & is a polite thing to do. And also, b/c *I* would not enjoy being randomly touched, I am careful not to do it to others, but when I feel empathy toward someone, I find myself automatically touching their arm. I dunno why, I guess that's all I can muster on my own.
    But the way you have explained your feelings makes so clear these aspects that I've never thought of before.
    There is a young man who has severe cerebral palsy at our church. Blake can't even talk or control his movements very well. It took me a long time to "figure him out" b/c he has a language all his own. He likes to be with people & his loving parents explain his thoughts since they can read his eye movements & facial expressions best, although sometimes, they end up just guessing til they get the "yes" sign from Blake (quick up-glance) He is always anxious to shake "hands" w/new people, which he does with his foot. He hugs w/his legs, applauds & sings by wildly flailing his legs & arms, is up in the choir every Sunday.
    He's one of the bravest people I know.
    I'm thankful that you have shared this helpful insight with us. I hope to remember it the next time I see someone that I feel to urge to give a wide birth & rethink the possibility that maybe they don't want it.
    God bless you!

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  10. Thanks to all of you who replied. I truly appreciate your sharing. This helps me to know that I'll be able to connect the disabled character in my novel to readers who don't have a physical disability.

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