User Rating: 0 / 5

Star InactiveStar InactiveStar InactiveStar InactiveStar Inactive

Being young with a disability is painful. Awkward. Stick-out-like-a-sore thumb in a sea of so called normal. Always wondering in the back of mind whether I was the butt of some kind of cosmic joke.


Several dozen years removed from the angst of adolescence, it’s funny to see the reaction to me from the adult perspective. People have 3 distinct reactions  to meeting me. 1) They want to coddle me and fumble around trying to help too much. 2) They have a sad puppy look in their eyes 3) Or, (and thankfully, this reaction is getting more rare…I hope) they see me and they panic and so they go to the old standby, to talk S-L-O-W-L-Y. The last lady that pulled that one on me I wanted to haul off and say something very biting, but of course I am terrible on the spot like that especially when I am thrown off by the gall of people.


Anyone that really knows me, (or thinks they do) understands that I try to roll as independently as possible.  Being out in the world with a disability, you might not always have an extra set of hands around. You learn ways to open doors, the best way for you to get household tasks done, or the art of carrying things. Granted, there are always situations where help is needed but, I am good in most situations.


Newer people who join my circle sometimes have to get “the talk.”   They come in and they see me and they assume that I am helpless.  They want to start doing everything not thinking that I have it under control.  The best course of action with me is just to let me go and do my thing, unless I ask for help.  I do have a certain way that I have to do things to get things accomplished and sometimes your help just gets in my way. As time  goes on I think that the longer you spend time around me, the more aware people become to the situation where help is needed and less of helping at every turn of the corner. It becomes less blatantly obvious to them that I have a disability and I have been told that they “stop seeing the crutches.”


As a child, they are much more blatant in their ignorance.  They don’t know any better.  Unless you have grown up around someone that has to deal with a disability on an everyday basis, you don’t have any realization that there might be someone outside of your atmosphere that might not be and look something similar to what you have known.  That ignorance is cute when you are little and you don’t know any better. If you get to be older and you still have that same reaction then that is just downright stupidity and you have total control over that.  You have less of a forgiving nature when another adult comes up to you and immediately assumes things about you just by appearance alone.


Please understand that I don’t need or even want pity. There is no room for that in my life. Pity is feeling sorry. I don’t even feel sorry for myself, why would I want yours?  Empathy there is plenty of room for. Try to understand what it is like to be in this body with weakened and tightened muscles.  A body that wants to go, but sometimes can’t because there is not enough stamina or there is too much pain that day.


So, would I change it if I could? If a genie suddenly appeared to give me one wish to have a “normal” body would I jump in it and get rid of the cerebral palsy? I would have to say no and that answer may very well surprise some people unless you have known me long enough.


Does the pain suck? Yes. Does the stiffness inhibit me from doing a lot of things? Yes. Does not having the stamina some days keep me from having the productivity that I would like? Yes. I would have to say though that the pros far outweigh the cons It just means that you have to find a different way to get a lot of things done. It might take you twice as long as the average person, but please know that it will get done and it will most likely try to do it to perfection because we know that people are looking for us to fail and we don’t want to have another reason  to undo that negative tape. You know, the loop of all the people who said we wouldn’t shouldn’t, couldn’t do whatever. The older I get the more I tell that shit to go the hell on. Go punch holes in someone else.


As time goes on, the disability isn’t so center stage versus when you are younger and you are defined by it. Years ago, I was Jen with the crutches or with the cerebral palsy.  Today, I am Jen, you know with the wicked sense of humor or the one who writes awesome poetry.  It’s not my sole identifier anymore.  To the world or to myself.  I am a person living with a disability. You also begin to know that NO ONE IS NORMAL. Everyone is disabled in one way or another. Whether it be drugs, food, alcohol, bad relationships, honestly, trust everyone has issues that can either make them or break them.  Things that they have to overcome to either make them a more evolved human being or a more destructive one.


The thing that scares people about me at their most primal understanding is that you can see what can go wrong in an instant.  You can see how nature can go wrong so to speak. You were one mistake away from being me. I hear that sigh of relief and I don’t begrudge you that. Don’t take that body for granted though. Nothing pisses me off more that someone who does not realize the gift that they have been given.  People who just abuse their bodies and just use them up like it is a playground that will always be healthy when they choose to finally stop acting like they are invincible.


Nothing comes easily to me physically. Nothing. I have to put in twice as much effort and energy to get things done. Housing cleaning is all manual labor. Try vacuuming on your knees. Imagine how you feel when you have the flu. That is what my body feel like almost everyday.  There is no relief. There is just a constant pain that buzzes in the background.  It is just by sheer force of will that I manage to get by sometimes. I get up and smile and push on.  It just a much a part of me as having glasses or flat feet.


I have gone camping in Maine. Hiking in New Hampshire. Traveled cross country on a train. Went swimming in the Atlantic. Tubing on a lake. Can’t is not in my vocabulary anymore.  I do these things because I love them but, I also do them to show the rest of the world that I can. Living my life is the greatest example of the power of the human spirit but is is also the biggest middle finger that I can give to those who said I wouldn’t even live to see the next day.