As I write this post, it is December 3 the International Day of Persons with Disabilities. I am ashamed to say that before my youngest daughter was born with Down Syndrome, I was totally ignorant of this day. I just did not know there was such a day to remember, celebrate and advocate for persons with disabilities. These days, I am more aware and alert to these things. I start seeing news and life a little differently. In fact, I am even doing theology differently. I read the Bible with a little more awareness of how it may speak to issues of disabilities. I am beginning to think through Christian doctrines to see if they are inclusive or exclusive of persons with disabilities. In short, my thinking and seeing has become more inclusive. Some of my previous blind spots have been removed. My daughter’s disability has changed me, and is continuing to change me, for the better. It is one of her many gifts to me.
Back in November 19, 2010 I took four York University students with me to L’Arche Daybreak in Richmond Hill, Canada to their Open House and Chapel Service that Friday evening. I did the same thing in the summer with a group of high school kids. Every time I went there for their chapel worship service, I am always blessed. I am always encouraged by the leadership of persons with disabilities. At L’Arche, the persons with disabilities are the “core members” of the community and the typically abled persons are their “assistants”. L’Arche’s founder Jean Vanier has a vision of community that gives dignity and respect to persons with disabilities as persons in their own right, with their own gifts to give us. It is so easy for typically abled people to treat persons with disabilities as charity cases, as patients, as objects of mercy and pity, as lesser persons, as the “disabled” — as if their disability totally defines who they are as persons.
So, at these worship services, persons with disabilities routinely take leadership roles alongside with assistants. They do the opening welcome. They helped lead music even if it was only banging a drum or playing spoons. They led in prayer. They helped serve the Eucharist, or Lord’s Supper. And they portray a genuine honest to goodness spirituality and a genuine acceptance of others. I wanted my Christian university students to see that and to learn from that. I wanted the future leaders of tomorrow to experience the gifts of persons with disabilities and to learn to see their personhood, first, and their disability, second.
Jean Vanier observed five different attitudes in Western societies toward people with disabilities. These five are:
- Seeing disability as a sign of disorder and needs to be suppressed or healed.
- A charitable attitude marked by pity.
- A recognition with respect and compassion that people with disabilities are human beings who can grow and progress.
- The realization that something good can happen when you are in a relationship with people with disabilities.
- “For some, there is a discovery that people with disabilities can lead them to God. They are a path to an experience of God. People with disabilities are necessary for the wholeness of the body, of humanity.” This process “is about humanizing disability, not spiritualizing it.” (Jean Vanier: Essential Writings, p. 48)
Jean Vanier’s writings remind me that all of us need each other and all the diversity of human life that comes with that — our intellectual, cultural, gender, ability and all other diversities. I need persons with disabilities, like my daughter, to make me more human, to make me whole, just as much as she needs me and others to make her whole. I need the gifts my daughter with disabilities bring. I need her to help me see God, to see others, to see the world and finally, to see myself in deeper and better ways.
What are your experiences with people with disabilities? What are some of the gifts you have received from them?
Related Posts: Easter’s Disabled God? and Bible, Church and Disability
3-D Christianity 
Our son Michael died many years ago of cystic fibrosis; you could say his disability was difficulty in breathing, and spending many months in hospital in his ten years of life. I would have given my life for his, but that’s not the way God works. I gained a great capacity for suffering, patience, endurance and love; but if his disease could have been prevented in any way, I would not hesitate to go that route. Someone in the family (regardless of career longings and expectations) inevitably needs to sacrifice their time and energy to look after our special-needs people. Thank God for institutions like L’Arche and Christian Horizons, and other organizations that help our special needs people live life to the fullest!
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Thanks Coby for sharing this. I can’t imagine what it must be like to see your child die. When my daughter went through open heart surgery a few years ago, I remember how helpless and frustrated I felt when she was moaning and groaning in the recovery unity. As a parent, I understand what you mean when you say, I wish I could give my life to save my child.
Yes, we grow and change from the experience of loving and being loved by a person with disabilities but sometimes, it seems that the cost is too high. Mark Stephenson, Director of Disability Concerns for the Christian Reformed Church once blogged: “I’m thanking God for the privilege of raising a daughter, Nicole, who has multiple, severe disabilities. Please note, I don’t thank God for her in spite of her disabilities. I thank God for her as she is today”. His blog post is here: http://network.crcna.org/content/disability-concerns/its-happy-thanksgiving
I am not sure if I’m there yet myself with my daughter. I can thank God for her in spite of her Down Syndrome. But like you, if I can have the disability removed today by some miracle, I probably would have it removed. I’m not sure if I can, at this point in my life, genuinely thank God from the bottom of my heart for her Down Syndrome. Is it a privilege? Honestly, I don’t know how to answer that question right now.
I do believe it is a gift because it profoundly and deeply changes me. But it might be a gift that I do not want. Philip Yancey once wrote a book titled The Gift Nobody Wants about pain. So, I recognize it as a gift but at the moment, if I’m honest with myself, it might be a gift that I would rather return if I could (talking about the disability, not my daugher!). But it might also be a gift that I might grow, like Mark Stephenson, to appreciate and love as is.
The complexity, of course, is that the Down Syndrome has made my daughter who she is. Without it, she would be a different person altogether and my whole life would be different too. What would I have gained or lost from that? Only God knows. And that’s where I think I have to exercise faith that God knows best.
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Thank you for this post. I previously worked with peoples with disability through the Friendship program of the Christian Reformed Church. I volunteered just after my own conversion. The “Friends” taught me more about God than many Christians have over my 10 years as a believer. They taught me humility, respect, joy, excitement, and love. There was one friend who gave out awards once month. Everyone hoped that they would be chosen for His awards, even we “teachers.” This ministry truly taught me how we are all interconnected and are one body and how we are to lift each other up, even though they lifted me much more than I think they will ever know.
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Thanks Michelle for the comments. The Friendship program of the Christian Reformed Church is great. My wife and I got involved with it for a year when we were still in Hamilton. I loved the awards story by the way! The “friends” truly know how to show appreciation and care.
It reminds me of another story: Once, I was a guest preacher in a Christian Reformed Church and there was a lady with Down Syndrome in the congregation. She had came up to me earlier and introduced herself, and enthusiastically welcomed me to her church. During the service, I made a mistake with the liturgy and got confused with the order of the service. I nervously laughed it off and corrected myself and we went on. Immediately after, during the singing of a song, I was standing in the front pews to sing so I can see the lyrics on the projector screen. The lady with Down Syndrome walked up next to me, and right in front of the whole congregation gave me a hug and said, “Don’t worry! We still love you!”
It was an uninhibited but wonderful show of encouragement, care, and love to me, the guest. I will never forget that. Wish we could always get hugs and affirmations like that each time we screw up! I like to think that’s what God does to us when we mess up: “Don’t worry, I still love you!”
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