What our world values and doesn’t value is painful beyond description.
Seeing the way my 80-year-old Dad was treated in a Rehab Facility broke something in me I don’t think can ever fully be fixed. Maybe I was naïve before. Seeing your Dad being treated like an inconvenience or a burden was painful. He was a prideful, independent man, and it was breaking him. We assume and accept the elderly will be in pain or die, so the urgency to find answers for pain or sickness can feel gone. People blanket them as all the same, when each person has their own incredible story, but so few stop to get to know it. Sometimes at the end, all we have our our stories.
I feel a theme in my life, and lessons I feel God is desperately trying to teach me. The lesson about my Dad was a recurring lesson with my boys. But I didn’t want this lesson, I tell God- because it is much too painful to acknowledge and live. The lesson of the world is this- We all have an outside value- things that make you more valuable to the world. The following is a list of things that make you more valuable to the world:
Able mind and body
Important Job (Athlete, Doctor, Celebrity).
None of this is new news to anyone. It certainly wasn’t to me. Until I had two sons with autism, I didn’t give a whole lot of thought to it. (That’s called privilege- not knowing the extent of discrimination affecting someone because it doesn’t affect me.) I never stopped to really think about the people who the world usually does NOT value. They are people that most likely are:
People with Disabilities
Not attractive by traditional standards
The less ticks you have on List One, and the more ticks you have on Two, the less valuable your life is according to society. That’s so messed up but it’s true. You know it and so do I. But knowing it, and seeing it is so different.
It’s what I’ve experienced through my boys, and the amount of sadness and pain this registers in my heart cannot be adequately described with words. There’s been many times it’s leveled me, and left me in bed for 24 hours. A truth I want to unsee. A reality.
Sometimes they are bothers- inconvenient nuisances. Sometimes they are invisible. They are forgotten without consequences. Excluded. That is not the exception- that is the norm. It can happen in friend groups, in neighborhoods, in schools, in jobs, in clubs, and in everything that connects people in life. You get weekly, and sometimes daily reminders of this. My boys autism has opened my eyes to this. But it's what all people in marginalized groups have experienced and experience today.
I wear a bracelet that says, “Change the World.” Some days it lights a fuel in my soul. But after years of trying to change the rules of inequality, I think of Ingrid Michaelson’s song, “Keep Breathing” when she says, “I want to change the world, instead I sleep”. Sometimes it just hurts less to sleep.
I am learning that loss isn’t just a part of life-it’s a requirement. We can’t have happy without sad. We can’t have high without low. We can’t have living without losing. Without death. It’s a lesson we know in theory, but it still knocks your socks off. And we can’t have equality without first suffering from inequity. I don’t know why they are the rules, but they are.
So, I fight to show you the beauty in my boys, and ask that you reconsider what matters to you in the world. We all say we love and accept people who are different. And I think we mean it. It's so easy to love people in words, but so much harder to do so in action. Because there's usually an unspoken parenthesis after saying "I love and accept all people." A parenthesis that says- as long as I am not disrupted or inconvenienced. As long as you follow my same morale compass. As long as you don't look different. As long as I don't have to invite you to my birthday party or my house. As long as I do not have to hire you. As long as I don't have to sit next to you. As long as I understand why you do what you do. As long as you do not make me feel uncomfortable. As long as you don't interrupt my status quo.
I’m so lucky that God opened my eyes to this pain- and it doesn’t just affect my boys- it’s everyone that must fight extra hard- the people on list two. It’s like a deeper, more beautiful part of the world I didn’t see before. Sometimes I mistakenly think it's a burden, but really- it's a gift.
Rumi said, “Yesterday I was clever, so I wanted to change the world. Today I am wise, so I am changing myself.” I realize I still have a lot to learn about marginalized groups. I have a lot to learn and do.
I will just have to start with me, and hope it’s contagious.
I want to change the world, but instead I sleep
I want to believe in more than you and me
But all that I know is that I’m breathing
All I can do is keep breathing
All we can do is keep breathing
Ingrid Michaelson- Keep Breathing