I’ve been thinking about disability and identity lately. I’ve wondered why many people who live with significant disabilities do not identify themselves as disabled, and even take offense at being called disabled. Yet, other people who live with disabilities not only embrace the term but even talk about “disability pride.”
As I listened to a commentary by Ben Mattlin this morning on National Public Radio, I was struck by the sharp difference between him and the late Christopher Reeve. Mattlin grew up with Spinal Muscular Atrophy (SMA) which prevented him from standing or walking and which has taken away use of his hands over time. He said that he often gets invited to groups who work for some sort of cure for SMA, but he always declines. He insists that he likes himself just as he is, and can’t imagine who he would be if he were not disabled. The late Nancy Eiesland expressed a similar sentiment.
In sharp contrast, Christopher and Dana Reeve dedicated their lives to finding treatments and cures for paralysis caused by spinal cord injury, and their foundation continues that work. You may remember Reeve as the actor who played Superman in several films, and acquired quadriplegia in a horse riding accident. The Reeves fought against Christopher’s paralysis mightily.
As far as I can see from my outside perspective, Christopher Reeve never considered paralysis to be part of his identity, but it seems that Ben Mattlin thinks of SMA is part of who he is.
This matter of embracing disability as part of one’s identity can happen with parents of disabled children as well. A couple of years ago, the adult daughter of some friends of ours died quietly in her sleep. She had lived her lifetime with severe multiple impairments. As my wife and I talked with our friends at the funeral home, the husband said something like this, “Not only have we lost our daughter, we’ve lost part of our identity. Throughout her life, we were parents of a disabled child. That fact defined our decisions, our relationships, and our volunteer commitments. Now we have lost that. We are not parents of a disabled child anymore. We have to figure out again who we are.”
I had never thought about my own life that way before, but it’s true for my wife and me too. The Lord used our daughter who lives with disabilities to shape us and our other children. God led my wife and me into new callings through Nicole. My wife is now a special education teacher, though her training in college was for general education. I have become the Director of Disability Concerns for the Christian Reformed Church, though I'm trained to be pastor of a congregation.
Although most people affected by disability would say that to some extent disability is both a part of their identity and an intruder, I think that most people lean one way or the other. For some, disability is a fact of their identity like being male or being 6 feet tall. For others, it’s an unwanted intruder like fleas on a dog or a mouse in the kitchen.
This distinction even affects people’s ideas about heaven. Ask an “identity person,” and she probably will tell you that she expects to live with the same disability in heaven. Ask someone who never embraced disability as part of her identity on earth, and she’ll tell you that she can’t wait to be freed from it when she gets to heaven.
I don't know what heaven will be like, except that it will be good. For now, while I'm still here on earth, I hope I can remember that different people can respond in very different ways to the same kind of disability, partly based on whether or not they consider it to be part of their identity. I hope that that knowledge will help me better love each person I meet. And love is the closest we'll get to heaven right now.
Comments
I liked the way this piece brought me into fresh ways of thinking about disability.
This is a very intriguing article! I was diagnosed with MS in 2005. I am sitting here wondering about my wording...thinking about it, I have said that I have MS, and I have said that I live with MS. I think it depends on the day-how good or awful I feel. If I feel decent, then I live with it-it is part of who I am. If I am struggling, then I have it-it is a monster that has taken me hostage. The important thing to remember is that a person may have a disability, but that does not mean the disability has to have you.
Attitude goes a long way in coping with illness. Most chronic illnesses are ‘invisible’; not seen on the outside by others like a cast or bandages, but felt, seen, and heard on the inside by the person who is diagnosed with it. Keeping a positive outlook can be a difficult task, especially when those around you say that you don’t look sick, and tell you to try harder because it’s nothing but an off day. I believe that the people around you-your support system-lends a hand in what you perceive you identity to be. For example, if you are surrounded by people that are willing to learn about your illness, and accept it when you say that you have to cancel plans, or have a nap, then you will be able to focus on what it takes to help you feel better. If those around you have not attempted to learn about your illness, and make you feel guilty with thoughtless judgmental comments, well, it is very difficult to have any positive thoughts or feelings about the illness or yourself at all.
It is human nature to identify ourselves with roles-mother, father, caregiver, sick person...but I feel that it is the attitude behind those labels that makes a difference. Attitude and perception can make or break a person, so it makes sense that one needs a compassionate support system. With support, we feel isolated...think of a time when you had the flu and someone at home helped you out. Now imagine if they had of been impatient and treated you as if you did this on purpose, just to mess up their schedule. Not nice. I feel that disability or not, our identity is shaped by our own thoughts and by the reactions of others towards us. Perhaps those of us who are offended when their disability is brought up have an inward sense that sickness equals weakness, and refuse to ‘give in’ to it...what we are taught growing up in our community plays a significant role in how we perceive ourselves and the world. Sadly, it seems that we place a higher value on how much work we can do in a day, than we do on taking care of the gift of life God gave us. In too many cases, a disability throws up a wall that separates people rather than pulling them closer. The person with the disability is not only discouraged with their limitations; they are too often left with feelings of uselessness and loneliness. It can be quite a circle.
There is no simple response to how people think about their disability in relation to their identity-each response is as unique as the person and their circumstances.
Mark, you said, “I don't know what heaven will be like, except that it will be good. For now, while I'm still here on earth, I hope I can remember that different people can respond in very different ways to the same kind of disability, partly based on whether or not they consider it part of their identity. I hope that that knowledge will help me better love each person I meet. And love is the closest we'll get to heaven right now.” ...that is music to my ears! —isn’t that how we are supposed to treat all people-with love, understanding, and tolerance? If we could all make a conscious effort to follow your example, the consequences would be amazing!
Spitfire, Thanks for your kind words. I don't always live what I wrote - "Love is the closest we'll get to heaven right now." Nor can any of us, but this is what the church needs to be all about. As you say, living with MS in many ways depends on how the people around you respond to you. I hope many more people will read what you say. One of the best ways that the church can learn better how to love is by listening to and learning from people with disabilities, with the people with disabilities as the teachers and the temporarily able-bodied people as the students. Though the Bible says that those whom many judge to be weaker members are "indispensable," (1 Cor. 12:22) many people are put on the shelf when they develop disabilities of one kind or another. Your example of judgmental comments you have received is one way people shelve people with disabilities. Another way is by ignoring them. Still another, not asking people with disabilities to contribute their gifts of time, talent, and treasure in the ministry of the church. Thanks so much for sharing a gift in this forum, and God's blessings! Mark
What Michael B wrote above reflects my thoughts precisely. Indeed a new and helpful perspective for me. Thank you!
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