"What are some things that make you sad?" This is a question that I ask in my abuse prevention class for people with disabilities. They bring out a laundry list of what it is to be human and to live in an imperfect world. "My mother died," says one woman with Down Syndrome, her face a study of sadness. "My friend moved away," says a young guy, on the shaving side of his teens. "The news," says another guy and everyone nods.
Life hurts sometimes.
I hurt now.
That's the cost of risk. Of daring to be human, to be in relationship, to love. The depth of my grief is equal to the heights of my joys. I don't want to give either up. I have felt sorrow almost break me, but I've felt joy overtake me. It's a rough ride through life. I don't get frightened at airplane turbulence because it's nothing compared to living a day on the ground.
Funnily, we want to protect people with disabilites from pain. From risk. From real life. People with disabilities have been disallowed to attend their parents funerals (because it will upset them) or disallowed to try something new (because they may fail). Being bound in chains of feather pillows is still being bound! In their wonderful book about people with intellectual disabilities dealing with grief called "Ya Got People," Caroyln Bowling and Jeffery Wilder take a disability rights approach to grief. They are passionate in their belief that people with disabilites have a right to grief, feel loss, and in many ways - live the life they are meant to live.
A woman once told me that she would often bring her dog to work at a group home and that the dog was wildly loved by all the people with disabilities in the house. When the dog was hit by a car she worried about how people would take it but felt that they should know. She went and patiently explained that the dog had been hit by a car and had died as a result of injuries. They were all sad but the guy that she worried about the most didn't seem all that upset about it. The following week when she visited the home he rushed out and asked, "Where's the dog?" She again explained that he had died. He scrunched up his face and said, "He just keeps on doing that doesn't he?" and went on his way.
He didn't get it. Not because he had a disability, not because he couldn't understand, but because he had been kept separate from all experiences of loss. He had been protected. This isn't "ignorance is bliss", this is ignorance as control. This is just unfair. He lost the opportunity to grieve, to say goodbye - instead the wound stayed fresh every time she came with the dog he asked about the dog. When she wanted to teach him about the finality of death people worried that he would be 'upset'. Ummm, you're supposed to be upset. It's NORMAL for heaven's sake. I wish I had met Carolyn and Jeffery back when I had this conversation, I would have known better how to advise the woman telling me the story.
I don't want to be protected from my feelings of grief. I don't want to have some pill take away the sense of loss. I want to live through this, I want my grief to be part of the memory of love and companionship that we shared. It's OK to hurt. And I'm a modern guy, it's ok to cry.
Life is hard, sure, but it's also has moments of joy, grace and love.
I love sweet and sour (veggie) chicken balls. I also love the sweet and sour life I'm living.
So here's to love, pain and the whole damn thing. Here's to lives lived, hearts broken, tears shed, giggles giggled, love shared, secrets whispered ... here's to all of us living all of life.
Yes, I'm for living without the self protective or other protective walls that create a psuedo life. To live fully is to hurt. I wouldn't trade it for anything else, and we demean others if we don't trust them enough to know they'll make it through the valley.
couldn't have said it better! I sometime feel the need to retreat from the world to spend some time 'feeling'. The rest of the world calls it 'sick days'....imagine if we let everyone do that - what would the world come to!
People "protect" children the same way that some people "protect" people with disabilities. And it's not good for children either, with or without disabilities. I've known two people who were diagnosed with illnesses that could have killed them in childhood--but their parents tried to "protect" them from the truth by not telling them. But they still found out any way (by accident), and probably ended up being more scared than they would have otherwise. And they still feel very betrayed (well into adulthood, having survived their illnesses) by their parent's choice not to tell. They understand their parents meant well, but it really damaged their ability to trust them.
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