The unique, conversational format of this review was proposed by the reviewers.
Of Such Is the Kingdom: A Practical Theology of Disability
Chesterton, IN: Ancient Faith Publishing, 2019
Charli: You and I both have read and written a lot about disability, including disability in the Church. But Summer Kinard’s book, Of Such Is the Kingdom, is different from books we’ve read before. What stands out about this book to you?
Monica: Well, the first part of the book provides some sorely needed Orthodox theological foundation for how the Church has approached and should approach disability. It’s been problematic for a long time in all churches. Not one church seems comfortable with the topic, and the way it gets thought and talked about can vary from slightly awkward to outright spiritually abusive. We really needed some exploration of the Scriptures and the Fathers on the matter, and I’m most pleased Summer has done so. The Orthodox Church, at least, has never cast doubt on the possibility of salvation when it comes to people with disabilities, but Summer makes a clear case for something better than the usual assumption that people with disabilities get to enter heaven under something like an Economia Clause in the spiritual contract. Spiritual life is important, being part of the Church is important, and she makes it clear that both of these are possible for everyone, disability or no.
As Summer says, we don’t know what our resurrected bodies are going to look like, and whether there will be disability in heaven. As she says, Christ’s resurrected body still showed the signs of crucifixion. As a matter of interest, that’s how He was recognizable to His disciples! There won’t be handicaps in heaven, that we know for sure. At any rate, we are being saved, disability and all.
Her book is in many ways a starting point. Even Summer herself wouldn’t state that it’s complete in any way. In fact, some parts of it feel a little out of balance, simply because there is so much ground to cover—such a range of disabilities—that it’s impossible to divide attention equally in one book among so many. But it provides two things I’m very glad to see: a theological foundation and practical advice.
Now I’ve got a question for you, though: You raised children with disabilities and now, as they are young adults, you help them navigate this world. What did you think of the “spotlights” in the book, where Summer has collected stories, from both her own experience and others’, about how people with disabilities have experienced parish life?
Charli: I think the spotlights are the most important things you’ll read in Of Such Is the Kingdom.
Most books, articles, essays that you’ll read about people with disabilities are written by people who don’t themselves have disabilities. You end up learning about autism from parents of autistic kids or from speech and language pathologists. You learn about cerebral palsy from parents of kids with cerebral palsy or from physical therapists and occupational therapists. You learn about what it’s like to be deaf or hard of hearing from hearing people. This means that you’re always learning through a filter, and the filter keeps the people with disabilities at a nice, safe distance.
Summer herself is autistic, so that closes the distance. And the spotlights bring other voices forward. They keep the difficulties faced by people with disabilities in our parishes from being abstract notions that you can nod along with and then walk away from. They make it personal.
The first spotlight is about Garrison, an autistic father whose daughter has spina bifida. When we meet Garrison, and when we walk with him as he tries to find a church that wouldn’t ask him to leave, it affects us. When he says that people who don’t have disabilities honestly don’t want to include disabled people, but they can’t admit that even to themselves, we hear it. When he says, instead of learning how to welcome them, “You make them ‘other,’ and they stay away,” Garrison explains, “and you don’t have to feel guilty,” we believe him.
Of course, because people with disabilities do begin to stay away from our churches as soon as they are able, people in the spotlights are largely heard through the voices of parents and professionals. And the spotlights (and the book itself) emphasize autistic people and their needs.
It’s not that Summer ignores other disabilities. There is, for example, a wonderful spotlight from a blind woman about her experience with icons. And Summer touches on the needs of people who are deaf or hard of hearing. She includes a spotlight about a dyslexic child, and one about including people with food allergies. I do think the book would have been strengthened if Summer could have shared the stories of people with a broader range of disabilities, and if more of the spotlights had been told by people with disabilities themselves. And it would have been incredible if she had tracked down people with disabilities who have left the church, to get their stories.
Monica: That’s true. However, I kind of fear that if she’d tried to cover all ground and be exhaustive, it would have ended up a 1000-page book. A series of subsequent books under this title, each covering two, maybe three disabilities more in depth, each compiled mostly from interviews with/articles by the people with said disability, could be wonderful. There could even be one by children, for children.
Charli: That would be wonderful! It is my prayer and my hope that this book will be the first among many explaining why and how we must include people with disabilities in our parishes. Whether Summer writes them, or other people write them, those other books will share other stories that will allow us to open the doors of our hearts, and our churches, to more people.
Monica: What about the chapters that give practical examples of how a parish, or really any community, can include its members with a disability? Do you think if a parish starts to implement some of those suggestions, families with disabilities will find it easier to be part of their community?
Charli: I do. I think it often happens that the Sunday school teachers want to include children with disabilities in their classes, and the people who serve coffee hour want to be sure people with food allergies can stay and eat safely, but they just don’t know how.
Summer’s book makes it clear how to do these things. She is a gifted teacher, and she makes it easy and straightforward. So I do think that if a parish starts to implement the things she suggests, families with disabilities will find it easier to be there.
What about you? What do you think is the most useful suggestion in the book?
Monica: I enjoyed the “spotlights” as well. We’ve got this saying: nothing about us without us. It happens too often that people with disabilities are talked about, where a lot of us know perfectly well what would help us.
Still, I think the theological foundation is a very crucial part of the book. I’ve seen and experienced too much damage being done by flawed assumptions about spiritual life and salvation. To achieve a paradigmenwechsel, we need accurate theological thinking. If we want people to stop casting demons out of autistic children, a solid theological base to show there are no demons there to throw out is indispensable.
Charli: In this book, Summer distinguishes between disability and handicap. Can you talk about that a bit?
Monica: The thing that stuck with me about how Summer distinguishes them is that the disabilities are ours, but whether or not they are a handicap depends on how inclusive our environment is. The people around us can do a lot to make sure we’re not handicapped, that is, that we don’t have to admit defeat in something we’d really like to do, because our disability cannot or will not be accommodated.
As an example: I’m unemployed, and my welfare office sent me to get tested earlier in the year because, frankly, I don’t quite fit the common image people have of “autism,” and neither they nor I had a very good idea of what I can do. We just had a list of things I failed at in the past. The test shows that intellectually, I function at university level. But whether or not I can perform at that level in a job depends heavily on whether the right conditions are met to accommodate both my autism and my hearing problem. If they are—I’m currently doing an internship where pains are taken to meet those conditions, and I haven’t experienced any problems there yet—I may have a disability or two, but I’m not handicapped by them.
Charli: Do you intend to share the book with people in your family or in your church?
Monica: Oh, absolutely. I’m already planning to order several copies to give to friends. Some of them are Protestant. I think there are quite a few things in this book that are interesting to all communities, whether Orthodox parishes, Protestant churches, or just people getting together in general. I’m even tempted to send our welfare office and Alderman one, since much of the “how to include disabled people in your community” part can be applied universally.
What is your favourite part of the book? What bit have you read several times? And why?
Charli: There is a short section, just three paragraphs long, about shushing. I love it. Here’s what Summer says:
The only person who ought to be shushed in an Orthodox Church is the devil when we breathe on him at the beginning of the service of Holy Baptism. Don’t let the serpent hiss out through you when you come to Communion. The head of the snake is being crushed, and God is feeding his children from the Tree of Life. Crush your prideful need to control. Crush your unkindness toward your weaker brothers and sisters. Crush the serpent’s head. Do not hiss with the serpent and frighten the little ones whom Christ has called.
There is nothing more repugnant to God than the ill-timed rebuke of children who are coming to Him. Do not do it. Put shushing out of your toolbox of human interactions. If you see a family with disabilities approaching the Communion line, and a child is making some noise, your shush could undo the careful work of days to help the child come for the grace of Holy Communion. Rather, if your attention is caught by a sound, redouble your prayers that God will have mercy on the child, the family, and yourself. That way, when you all commune, it will be in the proper love of Christ rather than the false righteousness of someone who places the need to enforce decorum over the need of God’s children to come to Him.
The habit of shushing others is far more disruptive than any noise a distressed person might make. The sound of distress inspires the desire to help. The sound of shushing inspires anger or shame or irritation. It has no place in a church service. If you find it difficult to pray when you’re around children or older persons who have disabilities that cause them to be louder than you would like, then humbly, and without making a show of it, move to a different place. Next, pray for the person whose presence distracted you. If you are able to bring yourself to do so, ask the family with disabilities to pray for you, too. This humility on your part will increase love for you from others and will increase your own love for the people around you, including the families that you find distracting. (Pp. 233-35)
If you talk with parents of disabled kids, they all have stories of being shushed. Whether the shushing was audible, or whether it was in the form of glares and stares, of dirty looks and sidelong glances, there is no experience of unwelcome more universal among families with disabilities. And I can’t begin to tell you how painful it is.
To have Summer take it on so directly, and in such clear and forceful language, almost brought me to tears.
What about you? What’s your favourite section?
Monica: This one sentence: Disabilities do not embarrass God. (P. 18)
I’ve been told that refusing to attend all sorts of healing services to be cured means I am somehow “ashamed” of God and do not wish to witness Christ. (Excuse the jargon. This was back in the day before I was Orthodox, but we find this attitude in Orthodoxy as well, just with different jargon). As if my disability isn’t just keeping me from God, but by insisting on being disabled, I keep others away from God, as well.
Our path to God isn’t blocked. Not a single disability is capable of silencing the heart. Nor are our disabilities blocking other people’s path to God. If it is, then that path was already blocked to begin with, and being confronted with a disabled person simply showed the blockage, nothing more.
As you said in your first question to me, both of us have written about disability. As has Summer, who has now come out with a powerful addition to the ongoing conversation. What do you think it will do? How can our own writing and this book influence how people see disability?
Charli: Can I talk first about what I do at work? I work at a very large company, and my job is to make sure my colleagues know that people with disabilities exist, and that they want to use our products and services that we create. And my job includes making sure they have the knowledge and skills they need to make everything they do not just accessible, but delightful to our customers with disabilities.
That takes more than training. It takes a culture shift. And that doesn’t happen all at once.
So I use the image of a teeter-totter. Imagine that there’s a big boulder on one end of the teeter-totter. That boulder is all the things that keep people with disabilities from being welcomed. And there’s an empty box on the other end. All the things that create welcome for people with disabilities are rocks that we can put in the box. And as we start throwing rocks into the box, for a long time it will look like nothing is happening.
But one Sunday morning, the usher will hand a visually impaired person a large print service book. A blind person will read a notice on a parish website that says service dogs are welcome. An usher will speak kindly to the nonverbal child, and the child’s mom will have tears in her eyes when she tells her friends. A little boy’s godmother will give him a picture book that shows a little girl with a walker and a wheelchair participating in church services with their family and friends, and he’ll know that his friend who uses a walker and a wheelchair is welcome.
Over time, that box will fill up. And pretty soon, the teeter-totter will start to tremble. And one day, one last rock, maybe even just a pebble, will get dropped in the box. The teeter-totter that had seemed so immoveable will move. The boulder of unwelcome will roll away, and the box of welcome will be brought down where it will be accessible to everyone.
So we keep writing. We keep talking. And we trust God to help us get more rocks into the box.
Of Such Is the Kingdom: A Practical Theology of Disability can be ordered directly from the publisher or from Amazon.
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Charlotte Riggle is an Orthodox Christian whose day job is senior program manager for Amazon, where she helps ensure that software designers and developers know how to make their work accessible for people with disabilities. She is also the author of two picture books, Catherine’s Pascha and The Saint Nicholas Day Snow [which Orthodoxy in Dialogue reviewed here]. She writes about the Orthodox faith, disability, and picture books at Charlotte’s Blog.
Monica Spoor is an Orthodox Christian and the author of Spirituality on the Spectrum: Having Autism in the Orthodox Church. She holds a Bachelor’s of Theology from the Evangelische Theologische Hogeschool in Ede. She also volunteers with special needs children, does translations, and serves as secretary of the regional advisory board for the department of welfare. She resides in Veenendaal, the Netherlands.
Ms. Riggle and Ms. Spoor have both written previously on disability for Orthodoxy in Dialogue. Check the Archives under their names.