Recently a letter to the editor from me was published about an incident during a concert at East Longmeadow High School. My daughter with Tourette Syndrome experienced screaming tics and was asked to leave. I received a letter at home from an anonymous audience member.

He or she wrote, “Your daughter was ticking, people were staring and squirming, it was very disruptive, and all of it was incredibly annoying. And you didn’t do anything. Instead you appeared to assert your legal right to be there as if you had a point to prove. Then you criticized anyone who stepped forward.”

Since the letter was anonymous, I am responding here. I’ve learned that nobody should ever assume what another person’s motives are. The last thing on my mind was asserting my daughter’s legal right to be there. I certainly didn’t want to... “ruin everyone else’s experience just to be able to say ‘I have the right to be here.’”

If this person knew the anxiety and uncertainty I was feeling, s/he may have seen things differently. When my daughter’s tics became severe, she isolated herself for fear of people’s reactions. She stopped going out, she stopped going to school, she stopped spending time with friends, she quit the swim team, and she stopped attending dance classes.

It took a lot of work on her part to get to the point where she was able to go out in public. She had to harden herself to people’s reactions, get used to the stares, the laughter, and the misunderstanding. I know that, just because the Americans with Disabilities Act gives us the right to be there, doesn’t mean we don’t have the responsibility to consider other people’s feelings and rights.

Maybe she should have left so as not to disturb others, believe me, I struggled with this. Ultimately, knowing how hard she worked to gain the courage to be there, I felt asking her to leave would set her confidence way back and be tantamount to saying she should be ashamed of herself. So I made the choice to let her decide what to do and support her. It wasn’t an easy decision, but it was the right thing to do. I’m sorry for any annoyance it caused.  Ultimately, because of what the man said to her, she did leave the auditorium.

The writer also wrote that audience members were “...barely tolerant” of the tics. “You heard the mumbling and shifting, saw people and performers looking, and so on. People next to me swore”. However, We found many people to be understanding and kind. It bothers me that this writer seems to imply that these people had the right to be rude (swearing, staring) because they were annoyed.  I guess our expectations of people’s behavior are higher than the writer’s.

I know, whether one has a disability or not, we all have the responsibility to consider others’ feelings.  May 15 to June 15 is Tourette Syndrome Awareness month. Let’s honor everyone, because we are all fighting some battle.

Marcia de Blok Devenitch
East Longmeadow