Hi, I’m Beth. I’m mother to Akiva, who’s 17 and has disabilities.
I am not afraid.
My son’s challenges are significant but I’m not afraid.
I am unsure about the future. His happy adulthood, my happy years as an older adult. What are his rights, what do I deserve, what will be the responsibilities his older brothers will shoulder? Will he be happy?
I worry he might not be happy. But he’s almost always happy. That makes me less afraid.
When I write about Akiva – his needs, his challenges, my challenges – I choose my words carefully but I am not afraid. Except for when I hit ‘publish.’
When I talk about our journey as a family – the tough moments, the tearful moments, the moments that I just wish it were different – I try to be honest. I know honesty is important. I know many people pity us, pity him, don’t truly understand what it means to be his parent, his full-time advocate, his person, his people, his caring community. We’re the people who help him shower and dress, who care for him when he is sick, who sing songs with him. We’re the people who love him. Sometimes, I wish it were different but I am not afraid.
When I post a picture of Akiva, I choose the happy ones, the ones where his cute, uneven teeth, his often crossed-eyes, his sometimes grubby face, are softened by the happy smile on his face. He’s kinda funny-looking but aren’t we all?
I am not afraid to show the face of disability – his disabilities that is – via my son. I am not taking advantage of his well-being. I am letting the world know that disability is happy, disability is every emotion and more. Just like not having a disability is so many things and so many emotions and so many experiences.
I am not afraid of exposing us, of sharing him. While I know he’s unaware of this exposure, I know that showing him to the world, my extended world, will help ease fears and misconceptions about disability. I hope.
But I am afraid of a world that treasures beauty. Where skinny bodies and 6-pack abs, along with being blonde and gorgeous, is regurgitated on television and in movies. There are few positive images shown of real people who look different, as opposed to actors playing a part.
I’m afraid of a Jewish world that treasures learning. Where how many degrees and how much you earn, gets more respect than your dedication to being a good person, an inclusive person, a person who believes that we were all created in G-d’s many images.
I’m afraid for other parents of children, teens and adults with disabilities. Those who feel unsure that the world will appreciate their loved ones. That the world will look kindly on their stories. Their tales of difference and challenge, of unusual beauty lost and found.
I’m afraid of a world that divides people up according to who can and who can’t. A world that divides those with disabilities according to who’s got this and who’s got that. A world that decides who’s high-functioning – whatever that really means – and who’s not. A world that sentences you and judges you for your difference without knowing what that really means.
So, I work past the fears. I tell his story. I tell our story. I invite you in, to read, listen and comment, so that you can understand and appreciate. So you can smile at the different-looking-behaving-whatever person the next time you see them on the street and be glad that they’re a member of your community. Because their people, those who love them, need you to try to be less afraid.
“And a rock feels no pain. And an island never cries.” Paul Simon
By Beth Steinberg, Shutaf co-founder
Originally posted in the Times of Israel on December 10th, 2014