- Jodi Samuels
Stay Warm, or Start a Fire
Locked out. Rejected. Ignored.
Beg for help, try to be heard, beg some more.
We search for comfort, perspective, and hope that you will feel a sense of dignity when sharing with other “Members of the Tribe”.
It’s not a tribe we chose; our children were born with special needs.
It’s quite heartbreaking at times to see the struggles of so many families. The world has come a long way in addressing human rights, poverty, and disability, but there is much more work to do.
I have been fighting for Caila since she was born. Every day begins with a never-ending to-do list: finding therapists, keeping track of academic progress, finding and securing the right resources to support her inclusion at school and in society, creating and working toward goals, and mapping out a path for her future. Then there are the hours of coordinating therapies, homework, reinforcing skills, and learning. The task of helping her feel genuinely included and helping her make and maintain friendships is one of the most daunting of all. It’s little surprise that most parents don’t have the time or energy to address the injustices or fight for a better world.
However, as we learn in this week's Torah portion named after its protagonist, Noah teaches us the importance of strong moral principles; it is our duty to register a protest even if it seems likely that it will have little effect. Rabbi Jonathan Sacks z''l explains why:
“Silence may be taken as acceptance. And besides, we can never be sure that no one will listen. Morality demands that we ignore probability and focus on possibility. Perhaps someone will take notice and change their ways - and that “perhaps” is enough.”
Noah built an Ark to save humanity and the animal kingdom. He is regarded as righteous but not as a leader. He did not gather the people of his generation - a generation that had completely lost its way - to try to convince them to change their behavior. A Hasidic text states that Noah was a righteous man in a fur coat, teaching us that we can choose between keeping ourselves warm in a coat or building a fire to keep everyone warm.
Noah teaches us that it is not good enough to be a "good person", but that we must also be leaders, encouraging others to be part of the change we want to see.
When people ask me if I feel all the advocacy I have done has had an impact on the world of inclusion, I answer that change is often evolutionary rather than revolutionary. I have tremendous gratitude to the leaders before me who stood up to fight injustices and failings towards people with disabilities and created a better world that we benefit from today.
As Elana Arian sings in the chorus of her song I Have a Voice, “I have a voice, my voice is powerful, my voice can change the world.”
We can change the world.