Do You Have a Disabled Sibling?

Welcome to my new blog focusing on the issues surrounding a disabled person and how it affects the family structure. Having a disabled family member changes the dynamics of the family, forever. No one is ever properly prepared for raising a handicapped child. There are no rules to follow and every family handles the situation differently, yet the array of emotions and issues remains the same. It is a life-long responsibility for all family members.

My younger and only sister, Lisa, was diagnosed as being mentally handicapped when she was three years old. Born with a club foot, she was characterized early on by a nurse at the hospital as being handicapped. This was long before we realized that she had developmental issues. Almost fifty years later, my father still has tears in his eyes when he shares the story of how his daughter was labeled handicapped by this hospital nurse.

Lisa was beautiful in an angelic way. Small and fragile, she had a perfect face, with a cute nose and large deep brown eyes. With the exception of her club foot, she looked perfectly normal. It was a cruel statement to call her handicapped. Yet, this would be a label that she would carry for her entire life. She would always be handicapped.

Her left foot required a few surgeries to straighten it out, which left it one size smaller than the other one. I remember accompanying my mother to the hospital for a check up and a new cast that she wore for the first months of her life. Saddened to see my little sister in pain, not understanding why she had to wear the cast, I felt guilty for being normal.

This was just the beginning of a long road with my sister. It has been filled with drama, pain, and occasional laughter as to the absurdity of our lives, as we as a family attempted to understand and to deal with the care of Lisa. We still do.

There are many issues that are involved when having a disabled family member. Siblings have no voice. Parents feel saddened and guilty. Quite frankly, everyone is tired. And as the years go on, the pain deepens.

My hope is we can share in this blog our experiences with this issue as a way to unite, and raise awareness by offering support and resources for one another. It is lonely being unable to talk about such a life-changing event.

Let’s start talking and helping one another.

Comments

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  • Terri

    I have three brothers with intellectual disabilities and one also has a mental illness. I am the treasurer of SIBS Supporting Il Brothers and Sisters a support and advocacy organization for siblings. I am also on the Sibling Leadership Network board and am a member of SibNet. There is more and more support for siblings like you and me. There is no need to be lonely as a sibling anymore. Nora Handler.

  • In reply to NHandler:

    Thanks, Nora for your comment. It is important to have dialog on this life changing event for a family. Siblings and parents need better communication. As you know, it is a highly complicated process that many of us spend years trying to understand.

  • Terri, my mom is now disabled due to a complication of her cancer. She needs to use a cane to walk and is very young for having to do so. It is hard in the winter in Chicago because she is afraid to venture out with snow/ice in fear that she'll fall. I highly respect your decision to bring this out in the open. Hope all is well.

  • In reply to Amy Litterski:

    Amy, your comment gave me the chills. So sorry to hear about your mom. Caring for a disabled person is not something many can talk about with their friends. It is a lonely path. Please stay in touch with my blog here and share your thoughts. It is here as a place to have a voice and to be able to talk about what you are going through.

  • I'm the "disabled sibling" in the family, being profoundly deaf, and was the only one with a disability until one of my brothers was also diagnosed as deaf (only moderately so.) What a cool topic to blog about!

  • In reply to Holly:

    Holly, so happy you commented here! Delighted to get your prospective on your experience and how you and your family deals with one another.

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