How I sold my uncle short

Theatrical masksThe tragic deaths and injuries at the Boston Marathon bring to mind how hard it is to talk about difficult subjects to people who have intellectual disabilities. I struggled with this issue as I developed a friendship with my Uncle Melrose, who had a profound intellectual disability.

Because he could say only a few words, it was not possible to have a conversation with him or to find out if he understood what I was saying. I could ask him a question, but he often could not respond.

When my dad, Melrose’s brother, died, I thought about taking my uncle to the funeral, but my family counseled against it.  He wouldn’t understand what was happening, they said.

Shielding my uncle – was it the right thing?

To some extent, that was probably true. After his mother died in 1943, Melrose kept asking where she was. I don’t know if he went to her funeral, but my guess is that he did not. I don’t know if he ever saw her in her sick bed when she was dying of cancer. By the time she fell ill, he was living in an institution.

I worried over whether I should tell my uncle that his brother had died, and in the end decided against it. It was so hard to know what Melrose understood and how such news might affect him. He had no coping mechanisms for grief and I didn’t want to cause him anguish.

But I have some clues as to how much he could relate to feelings of sadness. He had a reputation for being concerned about his dorm-mates and housemates who were sick. He often sat at their bedside, just to be with them while they were ill.

My uncle understood death

After Dad died, he and I went to the funeral of one of his housemates. It was a beautiful service and Melrose seemed genuinely moved by the experience. In this case, I am sure he understood that his friend Arthur was gone and would not return to the home they shared.

Perhaps my uncle had a better understanding because he was able to be there and see Arthur through his declining days. Perhaps he could grasp the situation because he saw his friend being carried out of the house on a stretcher.

I’ll never know the answers to these puzzles. What I do know is that Uncle Melrose had a very high emotional IQ. He loved with complete abandon and accepted others without reservation. He loved to hug his friends and he just liked being with the people he cared about.

Don’t sell folks short

So I probably sold him short. I know we all sold him – and ourselves — short by not allowing him to be a part of our family experience.  Hiding the truth from those we want to protect is not always the respectful thing to do.

I hope that conclusion is not lost on those who are charged with sharing the news about the Boston Marathon tragedy with people who might have difficulty understanding it.