Loneliness and Disability

Who do you call when you have a rough day? Who do you share good news with? Who defends you when other people are talking about you behind your back? Who comes to your birthday parties and sends you gifts at Christmas or Hanukkah? Think about the people you surround yourself with, and make a list of the four most important to you.

Our friends and family are our supports. We share our happiest moments and greatest tragedies with our loved ones, and we are there for them to share with us. We give and receive unconditional love and acceptance, and we gain our sense of belonging in the world from those ties. Ask people what is most important in life, and most will say their families and friends.

Imagine that the only people who visited you were paid to be there. Imagine those people did not share their happy moments with you, or listened to you share yours. What if those people came and went every eight hours, different people each time, and only talked down to you, gave you orders, or handed you medications. Maybe some of them ignore you completely, or even shove you around roughly and speak angrily to you when they don't understand what you are saying. Can you imagine that kind of loneliness?

A direct support staff is not a friend. We are staff. We may take on the role of friends, but a professional distance is still maintained. Do you have to pay any of your friends to get them to visit? Do you have to offer your family members insurance benefits and vacation days to listen to you?

For a large number of the people we support, family members are their only nonprofessional relationships. In some cases, family members may not visit, or may be deceased. Some of the people we support were turned over to lifetime custodial care and abandoned to state institutions or "training centers" at very early ages. The term "family" might be completely meaningless to some of these people.

As DSPs, we are often the only people available to help facilitate new relationships outside the professional circle. We owe it to them to help them expand their circle of support, and forge friendships. Loneliness is a major (if not the biggest) cause of challenging behavior. There is no cure for cerebral palsy or Down Syndrome, but there is a cure for loneliness.

I will offer ways to expand the circle of support in the next few posts.