Spread the Word to End the Word

Note: Spread the Word to End the Word Day is March 7. Go to https://www.r-word.org to pledge to not use the “R” word.

I’m generally not easily offended and I believe in free speech, but with that said there are some rules that need to govern common human decency and how we treat children and young adults who are born with special needs. Some comments are so hateful and disgusting they should never be made, especially on a public forum.

I suppose I’m lucky to have gone 20 years with no one ever making a rude or offensive comment about my child. My son is profoundly disabled and was born with a fatal degenerative brain disease. We had lived in ignorant bliss until now and had not personally encountered anyone who could say something extremely hateful about a sick child. A boy who has fought unimaginable battles just to be alive.

Then one day someone posted a comment on social media saying they, “Hoped my retard son would die.” It doesn’t matter to me why this comment was made. I feel the need to speak out and urge people to think about what they’re saying before something is put out into the universe that can never be taken back.

Choose your words carefully because what you say affects more people than you realize. When you post hate speech publicly you can end up with many unintended casualties.

Just because we live in a free country and are entitled to say, think, and write pretty much whatever we want doesn’t mean that doing so comes without consequences. When people use the “R” word they need to stop and think about how they would feel if this was being said about their own child, family member, or someone they love. All life is valuable and all people deserve respect, regardless of what special needs they’re born with.

Think before you speak and choose your words carefully, because the impact of those words may come back to you one day if you or someone you know has a child with special needs.

#spreadthewordtoendtheword

Ilyce Randell is the mother of two children, one typically developing 14-year-old boy named Alex, and one 19-year-old boy named Max who was born with Canavan disease. She has been working to help families affected by Canavan disease for over 19 years by advocating for patient rights, raising money for medical research and increasing awareness about Canavan disease. Ilyce has recently launched the world’s first international Patient Insight Network (PIN) for Canavan disease through a partnership between AltaVoice, (formerly PatientCrossroads) and Canavan Research Illinois. This tool is critical for advancing research and networking patients worldwide. Ilyce is also the President, Director of Patient Advocacy, and Cofounder of Canavan Research Illinois and Canavan Disease Research. You can read her blog War Stories from Holland.