Stacy Ellingen

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Stacy’s Journal:  The Yearning to Fit In

2018-06-03
By: Stacy Ellingen
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“Never judge someone by the way he/she looks.“  Most people are taught that beginning at an early age.  While we all know it’s not right to judge one another, everybody does—it’s human nature.  Regardless of age, race, religious belief, sexual orientation, economic status, or disability, as a society, we are taught to believe that everyone is equal and nobody is the better than anyone else.  Theoretically, this means that everybody should feel like they “fit in” everywhere all the time; however, it’s not realistic.  Most people experience feeling “singled out” negatively more than once in their life.  Often, it’s unintentional and purely situational, but, regardless, “sticking out” usually isn’t something to be desired.  People with disabilities often “stick out” more than most—it’s just a fact.

My disability is pretty noticeable.  Some people have very mild cerebral palsy and the effects often go unnoticed by many.  I happen to have a pretty severe form of cerebral palsy.  In addition to using a power wheelchair, I can’t verbally speak clearly and because of my fluctuating muscle tone, my arms and legs often move unintentionally.  My head often droops and sometimes my mouth hangs open or my tongue sticks out.  I also drool. There’s no way around hiding the fact that I’m “different.”

As I’ve explained in previous journal entries, I accept that I have a disability, but it doesn’t define who I am.  Unless a situation presents itself, I don’t think of myself as being disabled.   Growing up, I guess I became accustomed to “sticking out.”  Since I was in regular classes, classmates got used to having me in class and understood what I was capable of.  It wasn’t a big deal.  College was unique.  UW-Whitewater specializes in serving students with physical disabilities, so I certainly didn’t stick out on campus.  In classes, sometimes I felt like I stood out because I was the only one with visible limitations, but again, after people got to know me, it wasn’t an issue.

As I get older, I notice I feel I stick out more at social gatherings.  Whether it’s a retirement dinner for my mom, a friend’s wedding, or a cousin’s graduation party, I feel like I stick out like a sore thumb.  I think it has a lot to do with meeting new people who are unaware that the person that the event is for has a relative or a friend who has a disability.  Now, obviously, in all three of those scenarios, I was invited because the person wants me there and they see past my disability.  Often, at such events, the harder I try not to stick out (besides being in wheelchair), the more my muscles tense up which causes unintentional movements and noises.  Unfortunately, it’s just how my body works.  My mom, dad, and sister know not to tell me to try to fix it because it only makes it worse when I try harder. I also need to be fed at these events.  Being fed automatically draws attention to oneself.  Again, the harder I try not to make a scene, the more my body will react while eating causing me to cough and food to drop.

Admittedly, I also have some social anxiety when attending events where there are people my age.    While I know most people don’t expect me to get married and have a family, it doesn’t mean I don’t crave that.  I realize most people probably don’t even think about it (which is good), but I often feel singled out because I don’t have that.  Seeing friends and cousins with significant others and children at events can be pretty hard.  As happy as I am for them, it makes me wonder if it will ever happen to me.  The older I get the less likely it is and that’s not an easy thing to accept.  I try my best to experience happiness through other people’s eyes, but, sometimes, when everyone else around you seems to have what you desperately want, it can be hard.  As hard as it can be, I’m eternally grateful that I have amazing friends and family who always include me despite my circumstances.  I’m one lucky girl!

I’d love nothing more than to actually walk down the aisle and stand with the other bridesmaids at my friend’s wedding this weekend; however, I have a different path in life.  Instead, I will proudly roll down the aisle thinking about how lucky I am to have the bride as one of my best friends for over 25 years.  Will I stick out?  Definitely, but I’m honored to be in my friend’s wedding.  She obviously doesn’t have a problem with my circumstances, so why should I?

Having a pronounced physical disability often makes fitting in difficult.  Some people are completely okay with not fitting in because of their limitations, and others work hard to hide theirs.  I think I’m somewhere in between.  While usually I don’t have a problem with being seen as different, there are times where I desperately want to fit in.  It’s during those times that I need to remember that I was chosen to have a different path in life.  My purpose in life is different than most; I’m here to show people what is possible despite the curve balls life throws at you! 

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