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March 18, 2010

Finding the Right Words for Disability

Following Jesus' example in John 9, I want to see beyond 'the problem' when I encounter people with disabilities.

The word retarded has made the news lately. The Special Olympics designated March 3rd as a day of awareness about the hurtful and inappropriate ways that word is used. Before that, Sarah Palin excoriated Rahm Emanuel, President Obama’s Chief of Staff, after he used the word to describe some of his fellow Democrats. Palin went on to defend Rush Limbaugh in his use of the word to also describe the Democrats, something that caused another round of blogposts and op-eds.

It’s great to draw attention to a hurtful word. But the problems within our culture go far deeper than the use of the word retarded as a slur. When it comes to talking about disability in general, even those of us who want to be sensitive, just, and kind often don’t know what to say or how to say it.

I write as the mother of a child with Down syndrome, yet I’ll be the first to admit that I also struggle with language here. Do I call it "disability"? "Special needs"? "Developmental delays"?

The most telling example of my own loss for words came a few months ago. My daughter Penny and I went to a birthday party, and I met another mom. She said, "I have a child with special needs, too." She pointed out the window. "My daughter is ten. She's the one with the walker."

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Over the course of the afternoon, I found myself watching this woman's daughter, whom I’ll call Abigail. Abigail fed herself pizza. Abigail's body looked like spaghetti. She could crawl and walk with the walker, but she couldn't navigate the stairs. I didn't hear her speak more than one syllable, and the meaning of her utterances was often unclear to me. Abigail was thin and tall and beautiful, with smooth skin and kind eyes and a gorgeous smile.

And I didn't know what to say. I wanted to get to know Abigail and her mom, yet all I could do was watch. I thought about asking, "What is her diagnosis?" Or, "Where is she in school?" Or, "Do you like your therapists?" But all those questions seemed wrong, somehow, focused on figuring out Abigail's "problem."

And I wondered, how would Jesus have talked to Abigail's mother? How would Jesus have interacted with Abigail?

There are plenty of examples in the Gospels of Jesus ministering to people with disabilities of both the mental and physical variety. But John 9 serves as a particularly telling instance of the way Jesus both talks about disability and interacts with people with disabilities. It is here that the disciples ask the winning question: “Who sinned, this man or his parents, that he was born blind?” (v. 2). They betray their assumptions immediately: Blindness is the result of someone’s personal sin. They also betray their own blindness. They fail to see the man who is standing right in front of them. Instead they see a problem, a theological conundrum for Jesus to solve.

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Jesus answers, “Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life” (v. 3). He goes on to spit on the ground and apply a poultice of mud to the man’s eyes. He instructs the man to wash himself, and the man finds that he can see. Jesus overturns assumptions immediately, not only in his answer but also in his refusal to reduce the man to a problem and his insistence on seeing the man as a human being. Jesus touches him. He allows the man to participate in his own healing. And the man becomes a witness to Jesus. He coins the phrase, “I was blind, but now I see!” (v. 25).

The scene ends with the man coming to faith in Christ, and with Jesus confounding the Pharisees: “If you were blind, you would not be guilty of sin; but now that you claim you can see, your guilt remains” (v. 41). Back to the disciples’ original question: It is not the blind man who can’t see. It’s the rest of us.

This passage in John 9 teaches us at least three things. One, people with disabilities provoke questions, and often the questions are spiritual in nature. Two, Jesus overturns easy assumptions about the nature and cause of disability. Three, Jesus affirms the full humanity of persons with disabilities, while at the same time demonstrating the brokenness of everyone, with or without disabilities.

After my experience at the birthday party, I finally hit upon what I wish I had said. I realized I didn’t really want to know Abigail's diagnosis. What I wished I had asked was, "What do you and Abigail enjoy doing together?" "What are the things you love most about your daughter?" "What makes Abigail special?"

I identify with the disciples, but I want to be more like Jesus. I want to reach out to those who are different from me. I want to understand our common humanity. I want to see the places in my heart and soul that leave me far less able to worship God than any physical or mental limitation ever could.

Language matters, as the Special Olympics and Sarah Palin have recently pointed out. But what matters even more is the language of our hearts.

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Comments

I'm really enjoying your blog. I'm a disabled Christian researching the way churches respond to disabled people. I've been studying John 9 in relation to theologies of disability. It's great to hear about it from another person's perspective. Thanks!

I would have asked "what are her favorite activities?" Over the years, I've learned that what counts in our kids' lives is what they CAN do, not what they can't. I'm happy to answer questions about my daughter's diagnosis, but they usually come from friends who know her first as a swimmer, Special Olympian, social butterfly, Wildcat (high school team, of course!)... Those are the labels my daughter loves!

In order to give my response any credibility, I need to say that I have been in a wheelchair for 58 years. I have been treated every way you can possibly imagine and it is probably easier for me to relate to a handicapped person because it “seems” to be ok for me to ask, “What’s wrong with you?” I don’t think there is a right or wrong question to ask or term to use as long as they know you care.

There is nothing wrong with labels as long as we don’t use them to easily dismiss people, i.e. Rahm Emmanuel and Rush Limbaugh who are both “political hacks” with an agenda (did you notice my dismissive labeling?).

Don’t just ask questions about “Abigail” simply because you are curious, but ask because you genuinely care. If you don’t care, you probably should not be asking questions just to satisfy your curiosity. In order to love someone you must get to know them and they best way to get to know someone is to ask questions and spend time with them.

Naomi, thanks for your encouragement!

Jane and Terry, thanks for your additional comments. Asking about favorite activities is a great suggestion. And Terry, I'm sorry that it wasn't clear in the post that I cared to know about Abigail, just as I care to know about other children when I meet their parents at a party. Honestly, if I just wanted to satisfy my curiosity I would be asking the details of her diagnosis. That goes back to John 9 and turning Abigail into an object instead of caring for her and her mom as human beings. I certainly agree with your distinction between curiosity and caring, but at least for me, the way in which I ask questions is a part of communicating care.

Amy Julia

I have a ten-year old daughter with Downs and she is a joy beyond all anyone could know! How blessed I am!! I did not understand always about other extra-ordinary children like the ones in Nicole's classes until one day Nicole had an appointment and had to go in late. She was about 4 at the time and her favourite best friend was a little boy with cerebral palsy. I had seen him at class outings but had not really been involved with him. That day we came in and his whole being lit up at seeing Nicole! She did not care that he could not run like everyone else- she made sure he someone to play with. If anyone tried to get him to do things Nicole thought he shouldn't do she would take his hand and make the "no" sign for him! Until that day all I saw was a little boy with a thin wasted body- Nicole showed me the vibrant soul looking back at me. See why I am so blessed?!?!
Nancy Meager

"Jesus answers, “Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life” (v. 3). He goes on to spit on the ground and apply a poultice of mud to the man’s eyes. He instructs the man to wash himself, and the man finds that he can see. Jesus overturns assumptions immediately, not only in his answer but also in his refusal to reduce the man to a problem and his insistence on seeing the man as a human being."

The response given is quite respectful and honoring people of all walks of life. very inspiring.

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