A Few Words About a Special Person

This week I received some distressing news.  Uncle Chuck has stage four colon cancer.

Chuck is not my uncle really.  He is my uncle’s brother.  Chuck is developmentally disabled as a result of scarlet fever when he was very young.  Chuck is now over 70 years old.  I have known him my entire life.  He is what I would consider “high functioning”.  While I don’t know his official diagnosis, my professional opinion is that he functions in the moderate retardation range.

Chuck has always  seemed very happy and jovial.  While even as a child I always knew that he wasn’t exactly like everyone else, I never really thought to treat him differently.  He has always been a fixture at family gatherings, holidays and special occasions.  He was always just “Uncle Chuck”.

Chuck has lived for much of the past 40 years or so in  group homes and assisted living facilities.  He spent a few miserable years at a state hospital when he was much younger and has never forgotten his experiences there.  He fuctions with some level of independence and is able to manage his money to the extent that he knows the value of money and saves money to make purchases.  He was never independent enough to live alone, but has lead what I would consider a full and productive life.

Chuck is a very friendly man.  He likes people and interacting with people.  He likes talking about food, music, his friends, his job and what is in the news.  He  remembers details about the people he meets and likes to ask questions.

I can say with a great deal of certainty that while the topics that Chuck likes to talk about would be seen as normal  if he were “normal” and the questions he asks perfectly acceptable, they have been seen as weird, creepy, uncomfortable and annoying because he is developmentally disabled.  I can also tell you with some certainty that while he has held several different jobs during his lifetime, he likely did not earn nearly as much as someone who is “normal” who did the same job.

I have worked with people with developmental disabilities for the past 18 years.   I work at the sister facility to the one that Chuck lived in all those years ago.  Thankfully we have come a long way in the way we treat, support and care for people with developmental disabilities, but we still have a long way to go.

I was always comfortable around people with disabilities, likely because of my interactions with Chuck from a young age.  Some of my favorite people in the world have been people who are not “normal”.  I have learned a lot about life from those same people and I have certainly gotten more out of my relationships with them that I have given to them.

When I started writing this post, I wasn’t sure where it would take me, but I think I now know.  Compassion.  I encourage you to have compassion for those who are differently abled than you.

The next time you encounter someone with a disability, take the time to really see them.  Don’t look past them or pretend they are not there.  Don’t move to the other side of the street or go down and different aisle in the store to avoid them.  Treat them with at least as much compassion, dignity and respect as you would someone who is “normal”.  Take the opportunity to get to know them.  You might be surprised at what they have to offer.

I don’t think that it is fair that Chuck is having to deal with cancer after having lived with a disability almost his entire life.   I don’t understand “why”.    These are the things that test my faith.  I know however, that it was a blessing to have Chuck in my extended family.  He was my first introduction to what has become my life’s work.  Perhaps Chuck planted the seeds of compassion and empathy  in my soul.  I am going to choose to believe so.

Good thoughts and prayers for Chuck please.

 

 

Comments

  1. I will be thinking of him.