In the Eyes of...

I have been exercising with my friends at Disability Supports of the Great Plains for 7 1/2 years now.  Over the years, I've observed many staff members, home health nurses, guardians, friends, maintenance people, teachers, parents, care takers, rug cleaners, plumbers, etc walk through the doors of the activity centers where the clients spend their days.  And as I am leading an exercise class or lifting weights with one of my friends, or chit chatting with staff, I find myself observing his/her reactions as he/she walks in the doors.  I find my mind wandering to what he or she is thinking?  What does he/she think is going on?  How does this environment make him or her feel?  Do they see things the same way I do?  What lens are they viewing this world I work in?  It can't be normal, right?

Like when the rug cleaning servicemen walk in the door...and they see a lovely lady sitting in a wheelchair, away from the rest of my exercise group, quietly watching them exchange the rugs out....and out of nowhere she begins to yell and scream words that don't make sense, and bang on the table...do they quickly turn their heads as not to stare at this outlandish behavior?  Do they quickly write her off as being crazy and disabled? And just wish she would be quiet?

Maybe so...or maybe not...

Because what I see is a woman who so desperately wants to be able to share her thoughts with them.  Who wants them to know it is 11 AM and it is her lunchtime, and this is her day to go out driving with her favorite staff...so when her body clock routine tells her this and she realizes they are blocking the doors that she will be exiting soon...she yells.  She wants to tell them so bad how worried she is that if they don't move her staff can't come inside, and she won't be able to maneuver her wheelchair out to the van...so she bangs on the table in anxiety, and fear, and helplessness...and frustration.  (this is why I don't ask her to exercise with us on this day at this time)

Or when the UPS man enters the building, and walks around carrying a package, desperately trying to find someone to take the package off his hands so he can get back to his work...and he sees a grown fellow in a wheelchair, blowing raspberries between his lips, with drool dripping down his face, his head turned sideways resting on his shoulder, his eyes barely open, his hands tucked in at his chest, his knees bent inward under his wheelchair table, supported by 2 blue leg braces... like they have been in that position for most of his life...he moans a loud noise over and over again, almost as in a rhythm.  Does the UPS man feel sorry for him?  Or uncomfortable by this fellows presence or lack of presence, maybe?  Does he avoid eye contact or touch in fear?

Maybe so...or maybe not.

Because if he stayed a minute longer you would see that this fellow is actually doing my exercise class.  Like he always does.  And he LOVES Michael Jackson...so he is dancing.  He is singing.  He is excited. He is humming a rhythm.  He is happy.  He may not be pushing weights, he may not be pulling resistance bands, but he is all about participating with the class. He is showing it in his own way.  Doing it his own way.  Fully present.

Or when the home health nurse comes in and is looking for a specific client, and he or she is met at the door by a petite older woman asking her if she has seen her bracelet...desperately asking her if she can have her bracelet back, almost seemingly near tears, or maybe anger...barely letting the home health nurse in the door.  Does the nurse dismiss her, or ignore her?  Or walk on by hoping someone else will answer her question?  Or does she answer her as best as she can and move on?  And this woman returns to a nearby chair and rocks and rocks, back and forth, muttering unknown words under her breath. 

I'm not sure.

But if she would take a minute and ask her, she would learn that this woman is really just wanting to have a conversation.  Just wanting someone to interact with her.  Make her feel safe.  Maybe even a big hug. Help reassure her that she is at the right place for her work, and someone will help her find her bracelet in time.  Because more than likely, she is confused and her world feels a little out of control at the moment because she doesn't know what she is supposed to be doing.  Or who is picking her up from work today.  Or who her night staff is yet.  Or she can't remember if she packed her lunch.  Or if she wore the right shirt for ClayWorks... (From a therapists point of view, her mid-brain is probably off and she is needing sensory input, note the rocking, the muttering to herself, the panic in her voice, the need for a hug or reassurance) 

I am not saying any of these things have happened.  But I always wonder.  What does this world look like to others?  I know what it means to me.  And I love being a part of each and every client's "normal."