C IS FOR COMPASSION

When I was six years old, the child care attendants at my school used to make me wait almost the entire day before helping me to the bathroom.  They had other duties that were more important such as working in the cafeteria.  

The attendants would get angry if I had an accident. The women were very intimidating.  

Instead of understanding that It was difficult for me to wait as long as they expected me to, they got angry and made me feel as though my having accidents were my fault.  Where was their compassion?

When the physical therapist at the school would stretch my legs and I would cry because it hurt she would say, "Oh, that doesn't hurt." How did she know?  FYI this woman did not have a degree in PT. Her degree was in PE. I guess she did not know how to behave any differently.

I was a little girl who was afraid and in pain. It would have been nice if the woman had let me know she was sorry for hurting me.  That the exercises were necessary to help my legs. I did not experience caring and compassion from a PT until I was in the eighth grade 

I wish compassion could be taught.  Here is how a class in compassion might be facilitated. Anyone interested in working with a person with a disability would be required to role-play specific situations that a person with a disability deals with daily.  Through that role-playing, the students would learn understanding. That's all we want. To be heard To be understood.

Before my mom died we had a caregiver who watched my mom struggle to prepare dinner for the two of us.      I was really the client and not my mom. The woman wasn't being paid to help my mom.  Because she wasn't being paid to assist my mom, I guess the woman felt she didn't have to help my mom. She didn't. It would have been nice if she had.

Compassion.  It's simple.  Just treat a person with a disability the way you would want to be treated if you were in their situation. Listening to them + learning from them = understanding.

MY ADVICE IS

People are always giving me advice. I get it. People think that, since I'm disabled I do not have a lot of life experience.  They're right. My mom ran the house and made the majority of decisions.  I lived in my own little bubble.  I liked it that way.

As well-intentioned as my mother was, she didn't prepare me for life without her.  I had no confidence in myself and my ability to make decisions.  When my mom died my life changed forever.  I am now responsible for overseeing the running of the house, my care, and  Lucie's care.  It is, at times, overwhelming.  I am slowly finding my way and beginning to trust my judgment more. I may make mistakes, but that's okay, I learn from them.  If I could go back and change one thing, it would be to have my mother give me more responsibility.  I know my mom did what she did out of love, but had she given me more responsibility, I would have been better equipped to face the life I have now.

At the independent living center, there was always lots of praise when you did your job well.  At the time, I thought this was silly.  When I was teaching no one praised me every day for doing my job.  We were all adults, at the center, so why was all this praise necessary? 

Many disabled people think they don't matter. That they can't contribute anything to society because they are disabled.  Society plays a large part in reinforcing that belief. builds self-esteem and motivates a person to keep trying until they succeed.  People with disabilities need to have hope.  Hope that they will be able to turn their dreams into reality.  If someone is in a difficult situation, they need to be able to hope that things will work out and improve for them. Some people believe in being brutally honest.   Never take someone's ability to hope away from them. Hope is what keeps a person going.   Hope is what lets us know we're alive.

What is my advice to you?  Offer suggestions. But let the person try to solve a problem on their own. If they need help, they'll ask.    If you are the parent of a disabled child give them some kind of responsibility, Whatever they can handle. Let them know they matter.  Everyone on this planet contributes something to this life we have been given.  Even if it's something as simple as offering a smile to brighten someone's day.

I appreciate all the support (and advice) I have been given since my mother's death by family and friends  I know people are there to help me when I need it.  Maybe that's the best advice I can give you.  Just "Be There." for someone with a disability.  Be a friend, be a mentor, it doesn't matter.  Just "Be There."