I don’t want to go with you to visit other churches anymore.” I glanced in my rearview mirror and saw Espen in the seat behind me, staring out the window with a somewhat resolute look on his face. As a pastor for more than 15 years, I had, up to this point, always tried to take my family with me on speaking appointments in churches outside of my pastoral district. Being in England gave them a special opportunity to experience different church cultures, which I thought was a good form of education, so his declaration came as quite a shock.
Initially, I wondered whether it was simply the pronouncement of a rebellious teen and, therefore, to be taken with a healthy pinch of salt. But as he was the eldest of my three children and somewhat of a mood setter for his two sisters, I realized that I couldn’t allow his statement to go unexamined.
“Oh. Why not?” I enquired. He went on to describe his dislike of the oftentimes bizarre attention that he would receive as a wheelchair user. The long stares. Being patted on the head like a pet. Complete strangers wanting to give him a hug for no apparent reason or placing their hands on him and wanting to pray for him without even asking. Then he concluded, “People don’t see me, they only see my wheelchair.” That statement hit me like a bolt of lightning!
Espen was such a fundamental part of our everyday life that I had not thought much about how he, as a person with a physical disability, experienced church. It was the initial stimulus that jolted me out of my complacency regarding the experience of disability in relation to the church. What makes us view people with disabilities with such special attention? No doubt social and psychological theories explain this, but what about in the church? Should we expect a different attitude from Christians? What does the Bible have to say about disabilities? How can the pastor create a church environment that naturally includes such people?
I had initially thought of writing a checklist of important things for pastors to be aware of when it comes to disabilities. However, that could lead us into the pitfall of paternalism that easily becomes the default attitude in Christian circles. Authors such as Roy McCloughry lament that the Christian church often fails to listen to people with disabilities. “One of the most disabling activities in life happens when others debate the meaning of your life without consulting you about it. Yet this is repeatedly done to disabled people.”1 In order to avoid this being another “disabling activity,” I would like to use the rest of this article to allow the voices of people with disabilities to be heard. In other words, the most important thing a pastor should know about disability is to listen to the individual.
The voices of the people
My research into the lived experience of people with disabilities involved in-depth interviews with Seventh-day Adventist church members with physical disabilities. Their responses showed a wide spectrum of experiences:
Insignificance. Insignificance describes the experience of feeling that, as an individual, you are not regarded as an important member in the life of the church. You sense that you are of so little value to the community that your absence would not be missed. Robert2 expressed this reaction when he concluded, “Whether intentional or not, you feel you’re burdensome. And I think some of that was made to feel intentional.”
Discrimination. Arthur described his disappointment in encountering continual resistance to his suggestions of changes or adaptations that the church could make in order to meet his needs as a wheelchair user. “I have to say, the amount of discrimination I have found at church is probably greater than any I’ve found anywhere else. I’m talking specifically about my church. My experience was not always a comfortable one, and I felt the way in which I was spoken to at times
. . . was not the way in which a 58-year-old able- bodied person would be spoken to or treated.” The fact that he thought church members would have more easily understood what it’s like to be discriminated against as a minority compounded his disappointment.
Stereotyping. This is where disability gets viewed as something negative and treated as a problem of the individual without any communal responsibility. Melissa had developed a chronic debilitating condition that left her needing to use crutches. She described how disappointed she was to be intentionally excluded from a particular program at her church.
“People were invited to tell their stories, telling about their challenges, et cetera. Then you would talk about your progress, or your healing or whatever is keeping you and bringing you comfort. One of my ‘adopted’ daughters in church went to enquire why I wasn’t invited to take part in the program. And she was told, ‘Well we didn’t ask her, because she’s disabled, she can’t walk, so we didn’t ask her to sing.’ You know, I don’t use my feet to sing. I don’t use my hands to sing. As a matter of fact, the strongest part of my body is my mouth, and that’s the only thing I’ve got! The funny thing about that, too, is that for the first eight years before I got sick, I used to sing almost every Sabbath in that church.”
Ministry inclusion. One should never underestimate the power of incorporating people with disabilities into church ministries. Richard described his experience: “At one time I wasn’t included at all. I don’t think there was anything nasty about it. I suppose perhaps people didn’t consider me because I’m blind. But we’ve all got talents, we’ve all got different skills. I used to come to church, then go home again, and you can feel out of things. But since I’ve become a deacon, it’s wonderful! I’m glad, because I feel I’m involved, I feel like I’m offering something.”
It should be obvious that total member involvement also includes people with disabilities, but sometimes inclusion comes only as the result of persistence on the part of the people with the disabilities.
Joanna, who is blind, initially got active in her local congregation as a result of her own initiative rather than the church seeing her as a resourceful person. “When I was baptized, there was a big baptism of, I think, about 19 of us. Afterward, they started to organize people into the various departments, to get us settled in. But I wasn’t put anywhere. So, I went to the elder and said, ‘Hold on, everybody’s been put somewhere, what about me?’ That was ignored, so I went to the pastor. I said, ‘I need to be settled into a ministry also.’ They never really did put me anywhere. So, when they started to announce different things, like prison ministry, then I put my name forward. I’d follow up by phoning the person in charge, asking what I needed to do to join the prison ministry. You have to follow things up. Then eventually people realized, Oh she can do something. From then on I’ve been asked to be more involved.”
Insensitivity. Joanna’s experience as a blind person has been somewhat bittersweet, however, because of insensitivity. Once, while sitting in church, she heard a woman a couple rows behind her commenting on her blindness and her family. “How did she manage to find a husband and have children, and I can’t even find one?” Joanna’s evaluation shows her hurt: “Those are the things that can really destroy you if you’re not a strong person. During the past five years, I’ve been so discouraged that I said I wasn’t coming back. But then, again, I know God called me, and I have to remind myself that I’m not here for them, and so I keep going. The disability in itself is easy to cope with compared to how people regard you. Sometimes when people open their mouths, it leaves me questioning, ‘Do they think that you don’t have feelings?’ ”
I hope you are able to listen to these voices without becoming too defensive. Remember, the most important thing a pastor should know about disability is to hear the individual. When you take time to do that, you will also encounter positive experiences: being included in ministries, being on the receiving end of a proactive willingness to make necessary adaptations to meet accessibility needs, experiencing an acceptance of varying levels of involvement (with the caveat that sometimes that can lead to the pressure of having to perform like a hero), and having personal friends that give a person a sense of being socially included.
So, for example, Alice expressed how happy she was to be the organist at her church. When asked if she ever felt excluded from the church fellowship, she replied, “I’m right in the middle of it!” Being an active participant in a small group resulted in her having very good friends in the congregation and gave her a strong sense of belonging.
She went on to explain that she does not make too much of her limitations, and that seems to color her whole church experience. “I do what I can do, and people seem to know where I’m at. They accept it and I accept it, and we have a laugh about it, or they say ‘How are you now?’ and I say ‘Oh it’s pretty rough you know, but
oh . . .’ I try to live in the present!” Thus, having space to be herself and knowing that she is accepted has made her church experience an overwhelmingly positive one.
Participation obviously has a very positive impact on people with physical disabilities. However, it can have a drawback. Margaret was also very glad to be a central part of her church, but she did express the following concern: “Sometimes they put too much pressure on you to do so many things; they expect you to do so much and forget that you’re ill.” She seemed to be expressing a kind “hero pressure” that urged her to perform beyond what would be normal for a person living with certain impairments.
Samantha expressed it this way: “People’s attitudes can be quite frustrating at times, especially when they want to see you as an inspiration and kind of put that upon you. I feel that particularly in the church community. . . . There’s one particular person who always approaches me with ‘You’re alright, aren’t you?’ And I always think that’s telling me I’ve got to be OK. I’m not allowed to be anything [other] than OK. And sometimes I’m not. Obviously, people that are closer to me are more accepting of that, but some people want to see me as almost like a conquering hero, managing to cope with everything that’s thrown at me, and sometimes I can’t.”
Margaret and Samantha illustrate what some commentators have seen as the pitfall of the Paralympics, which can leave one with the question, Do I have to be exceptional to be accepted?
Nevertheless, Samantha went on to describe her fellow church members in the following way: “They really have been amazing. . . . I think, generally speaking, everybody’s been fantastic and understanding and been there 100 percent for me when I’ve needed them to be.” She explained that they were aware of her needs and were more than willing to make adaptations to fit them.
Dignity, not disability
It was gratifying to find that a large proportion of the people I interviewed expressed complete satisfaction at their level of inclusion and participation in the life of the church, and the proactive initiative of their congregation in trying to have their needs met. James expressed this in the following way: “They were really good. They would just come and ask if I needed anything. And not in a condescending way or anything because obviously I might have some additional needs that other people don’t have. They would just ask in a really open way and just sort things out, so I could take part if I wanted to. But then if I didn’t, that was also fine.”
Again, having the space to be as involved as much as you want goes a long way in making church a pleasurable experience.
Thus, let me leave you with perhaps what I would regard as one of the greatest lessons I have learned as a father: disability does not define Espen. He’s a highly complex individual just like you and me, and so he should be treated with the same unprejudiced dignity and respect that every person deserves. Get to know the individual.
- Roy McCloughry, The Enabled Life: Christianity in a Disabling World (London, UK: SPCK, 2013), 19.
- All subsequent names of research participants are pseudonyms.