Friday, February 22, 2013


When I was little, the child care attendants at the school I attended, 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 lunchroom.  They would become angry if I had an accident.  I was only six years old and these 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 was 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?  Where was her compassion?  I was a little girl who was afraid and in pain. It would have been nice if she had let me know she was sorry for hurting me, but that the exercises were necessary to help my legs.

Anyone working with a person with a disability needs to have compassion.  They need to have empathy for the person's situation.. They need to be able to put themselves in the other person's shoes. They need to think about how they would feel if they were in a similar situation.

I mentioned the importance  of compassion briefly in my post titled I GET BY WITH A LITTLE HELP.   I wish there were classes in compassion.  Anyone working with a person with a disability would role play specific situations that a person with a disability deals with.  Through role playing would come understanding.  A person with a disability does not want pity, they want understanding..

Before my mom died, we had a caregiver who watched my mom struggle to prepare dinner for the two of us.  Since I was really the client and not my mom, the woman wasn't being paid to help her.  Because she wasn't being paid, I guess the woman felt she didn't have to help my mom. She didn't, but it would have been nice if she had. I was thankful she only worked for us one day.

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

Thursday, February 7, 2013


People are always giving me advice.  Neighbors, friends, family.  I suppose it's because they think that, since I'm disabled, I have not had a lot of life experience.  It's true. Before my mother died she ran the house and made the majority of decisions.  I led a very sheltered life.  And, 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 judgement 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 everyday 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.  Praise 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. I know there are people who believe in being brutally honest. By being brutally honest, you may cause a person to lose hope.  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.

So, what is my advice to you?  Offer suggestions, but let the person try to solve a problem on their own if they can.  If they need help, they'll tell you.   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 can contribute something in this life.  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."