The Beauty in Brokenness: An Inside-Out View of Disability and the Church

I am NOT exceptional, I am NOT more inspired, I am NOT stupid, NOR am I intellectually superior! In reality, I AM, just like you!

At the age of six, nearly seven, I was diagnosed as an epileptic* and, for the most part, I was excited. I felt like it made me unique, special. I had something no one else had and, like every other kid in the world, I believed I could do anything. I still do, to some degree, but social labels are powerful, so I learnt, at a very young age, to hide my feelings. To hide my diagnosis…

Spastic, stupid, moron, crazy, delusional, dumb or dim, retard, freak, insane, hysterical, idiot, mad or mental, defective, psycho, nuts, spaz, demon possessed, you’re not like us, why don’t you kill yourself!

As hard as it is to read, and as insulting as these words are, I have been called all these things many times and I still live with these insults. Social labels have an effect. If you are treated a certain way your whole life, you start to believe it.

Recently, I attended the sisterhood conference at Newbold College. The theme was “The beauty in brokenness!” This sisterhood is one of the calmest, inclusive, and comforting groups of people in the church and I look forward to the conference every year.

I was sitting, listening, and thinking and it suddenly struck me! I am broken but I am not different. After that I decided to change my own thinking but also realized that I need to change everyone else’s as well. I thought, “I am no longer going to take these derogative words lying down.” At the same time, I recognized that this kind of behavior comes from ignorance. The best way to change minds is to inform.

I do have a physical disability. Speaking plainly, I have brain damage. However, my brain functions, most of the time, just like everyone else’s. I also have diagnosed OCD, diagnosed depression, suffered postnatal depression following the birth of my daughters (believed to be partly situational), and I live with increased susceptibility to depression. I do, however, find comfort and support in God!

And God is important! I grew up in the church. My father is a Pastor, as was his father and grandfather. You get the picture. On some occasions the church, and my friends there, have been my comfort. The same is true for friends I have spoken with who share other disabilities, come from other generations, other countries, and have their own unique perspectives. There is much that is good, but also some serious challenges. My conversations and experience have led me to compile a list of things that should change along with some that should remain the same or be expanded. Let me share first the good things the church has done for me and my friends!

The Good

1. At church, in Pathfinders, at the church youth group, small groups, prayer groups, no one is an outcast! For most of my youth and teen years, I was bullied everywhere except church! I fully believe that, if the church and my friends had not accepted me, I would have ended my life. I will be forever grateful to my friends for their acceptance and support! I am grateful to the church for providing a safe place for discussion, communion, fun and friendship! These feelings are shared by a few of the people I have spoken to. Small groups and prayer groups appear to be a very good way to build a support system and to make friends.

2. Growing up in the church has provided vast opportunities for so many experiences! I have been to many places and seen many things that I never would have otherwise seen. I’ve been to camporees, shared mission in orphanages, dog pounds, old people’s homes, hospitals and much more across the world. Some for fun, some to help others. I’ve done some teaching and become a mentor. I’ve learnt some hard truths and some fun facts. I‘ve had work experience, life experience, and fun experiences and will be forever grateful!

3. I’ve had the opportunity to take part in youth services, sing in a choir, join and teach a mime group, be a youth leader, and part of a worship team. I’ve learnt to do things despite the fear, despite self-doubt, insecurities, or worry of a backlash. That is partly why I am here writing. I have the courage to write this now. I am an introvert, but I have done public speaking. I am incredibly self-conscious, but I have pushed past that to achieve. I am disabled, but it hasn’t stopped me from doing anything I have wanted to do. All of this was made possible through church support and friendship! For that I will be forever thankful!

4. Encouragement from church members, for me, for pastors, for those with worries, those with health problems, etc. Such thoughtfulness is appreciated. Affirmations and positive words help! No matter how small.

5. The church pastor is also a very good back-up and is a good person to go to for help. They are also trained to know when to refer people to a doctor or other health professional.** And if the support can go further than that it is superb. One person said their pastor put aside time to try and help. Which is a fantastic way to support someone, just by giving them time. The same may also be true for church elders or other trusted leaders in the church.

6. The culture of openness to discussion has been helpful for forming and developing a belief or view of anything under discussion, e.g., God in relation to disability. There are people who have allowed for exploration, asking tough questions, and having difficult conversations about God and disability. Openness and an open-mindedness, can have a very positive effect on life and belief.

The Bad

Sadly, not everything is positive. I’ve equally had very negative experiences within the church. If I didn’t have the friendship circle I have, I could very easily have left the church as a result. Mostly these do tend to be exhibited by a very small minority, a couple, or by a single individual at a time. At their most basic, these situations fall into four main categories: 1) Behavioral shift, 2) Identity defined by disability, 3) Fixation on cure, and 4) Insults.

1. Behavioral Shift

A behavioral shift is when a person changes their behavior in response to seeing or coming to know that someone has a disability. I understand that it’s human nature to make judgments. However, I believe that if you know the effects of your judgments you can modify your behavior.

There are four main behavioral shifts:

i. Becoming too nice. If it is genuine, it is fine. If it is because you know someone has a form of disability, it is not.

ii. Act like they are stupid. Regardless of whether they have an invisible, visible, physical, or mental illness, never, and I mean NEVER, assume someone is stupid. Chances are, their intelligence is perfectly normal. Don’t talk down to people, don’t talk to their friends/partner instead of them. Don’t ignore them.

iii. Don’t feel like you must include someone because you feel sorry for them or from some misguided idea it is what you should do. The last thing they’ll want is pity. Only ask if they would like to be included if you think they will be a match. Don’t design programs because you feel like they need to be included. Equally, don’t assume someone is a spokesperson for every disability. Be genuine, because we are human, too!

iv. On the flipside, don’t exclude someone because you think they will be incapable. You may be surprised. Ask yourself, “will they be interested?” “Is it something they’d want to do?” and, “Will it be enjoyable for them?” You can ask them about their interests but don’t force it.

2. Identity Defined by Disability

There is more to us than just our disability! We have likes, dislikes, loves, losses, feelings, etc. Just like everyone else. We have ambition, will-power, strength, etc. Just like everyone else. I have epilepsy, but it does not define my life.

3. Fixation on Cure

Don’t assume we need fixing! There appears to be a belief that we must all strive for perfection. Strive for “normal”! There is no such thing. We are all imperfect, every one of us, including you! Including everyone! Striving for perfection or “normality” is not only impossible, but mentally and physically straining.

Not all of us believe we need healing. I think I gave up that belief when I was around seventeen when my epilepsy came back again after a short period of remission. I believe that I am here for something. Only God knows what, but having survived two memorable near-death experiences, many more that I don’t remember, and the ever-looming threat of death, including, at some points in the past, suicidal thoughts, it seems I’m not going anywhere yet. I don’t think of myself as broken. I think I am here to curate change and create change. I am okay as I am.

Genuine concern is fine, but we are not a circus, a goldfish, or a science experiment. If you ask if we are okay, unless it is genuine, our likely answer will be “I’m fine!” On the flipside, don’t be scared to ask. We understand.

Don’t believe we are praying for healing! This is a difficult one, as for many this is what you would expect. However, it is an unhealthy frame of mind and it is highly likely we’ve accepted who we are.

4. Insults (The Ugly)

Direct, indirect, or accidental insults! This is linked to the previous point, the idea that we are striving for healing. Don’t ask if we’ve tried being anointed, etc. If you’ve thought of it in the few minutes of conversation, chances are we have previously thought about it living our life with disability. Try to refrain from suggesting cures, miracles, potions, healers, diets, exercise, etc. After one serious seizure that left me hospitalized, I was offered almost 200 “cures” by well-meaning people who had no understanding of the complexity of my condition.

Overt insults! This is the ugly bit and may be hard to read (fair warning). In my experience, pastors’ kid or not, I’ve been told I’m not spiritual enough, that I need to pray more. I’ve been told that my parents, or their parents must have done something bad for me to deserve this (and, let’s be frank, I already said I’m okay with who I am and what I have). I’ve been told that I am being punished for something, or that I am demon possessed and they’ve crippled me, or that I should have stopped believing by now. I have had much more thrown at me by my own church, members, and even pastors, than anyone should have to deal with.

Please refrain from preaching about assumptions. Preaching about illness/disability should have research to back it up. In my experience, I have had people preach about demon possession and then say something like “and now in modern society, we call it epilepsy!” Can you imagine how that made me feel?

Regardless how good the rest of the sermon was, I immediately switched off. Then I went to educate the pastor. I cannot be the only one affected this way. Please be understanding, sympathetic, and conscious of the people in your congregation.

If we can change just these four points then the church will become a far more welcoming place and could potentially help more people to become less ostracized, excluded, or demonized by society and the church. It is possible!

Limitations and Possibilities

My challenge is to look at what I can do, not to live by limitation. It is true, I may not be able to drive a car, but it doesn’t stop me from getting where I need to go. No, I can’t do things spontaneously, but I have learnt to meticulously plan in case something changes, either good or bad. No, I can’t work in a normal office environment, but it doesn’t mean I don’t work. No, I can’t do a university degree, but I can and do still learn regardless. I have learnt to find ways around the issues. I have learnt to adapt! And yes, I do still believe in God, just like you!

So, an overview of both the positives and the negatives at church:

Positives: things we should keep doing or encourage:

i. Church groups – Small groups, prayer groups, crafting groups, youth groups, pathfinders/adventurers, choirs, etc.

ii. Experiences – Camporees, teaching, singing, oral recitation, helping the homeless, mentoring, etc.

iii. Helping overcome boundaries – facing fears, self-doubt, etc.

iv. Encouragement from church members, pastors or elders, etc. Someone to listen!

v. An openness to discussion.

Negatives: things we need to work at:

i. Behavioral shifts – Monitor your reactions and don’t judge too quickly.

ii. Remember there is more to people than just their disability.

iii. Don’t assume we need fixing. That might be the aim of some but not all. We may be fine as we are, or fixing is not an option.

iv. And definitely no insults! Think about what you are saying before you let it come out.

I don’t believe that I am broken. I also don’t believe that I am whole. I am what I am, and I am okay with that! But the beauty in this “brokenness” is that I can, and do, strive to help others! The best way to help is to talk, to encourage, sympathize, and let them know this is normal and can happen to anybody at any time. Suggest small groups, or prayer groups, and ask them to seek help if needed.

It’s all about stepping up! Helping improve others’ lives as well as your own. And if you think you may need help, ask! Don’t be afraid.

Let us be like children. Unafraid and excited for anything new!

(My special thanks to Espen Johnson, Anna Radosh, and Victor Hubert for assistance with this article.)

*Epilepsy – There are many forms of epilepsy. Mine is pre-frontal or temporal and uncontrolled. This means there are many things that are not possible for me (like driving) and my seizures are uncontrolled. There are many other types, and no one suffers in the same way.

**If under abuse or know about someone, please seek social services or a counselor.

See also:

A 2014 recording of Amy and her husband John, In Conversation regarding her life, her illness, and her God.

Further resources:

There are a whole range of resources that may be able to assist you if you have been affected by the issues in this article. The following are UK resources but check online for what may be available in your own country.

Suicide:

• Samaritans – Phone: 116 123, email: jo@smaritans.org or go to their website at: www.samaritans.org

• Campaign Against Living Miserably (CALM) for men – Phone: 0800 58 58 58

• Papyrus (people under 35) – Phone: 0800 068 41 41, Text: 07786209697 or email: pat@papyrus-uk.org

• Childline (under 19) – 0800 1111

• The Silver Line (for older people) – 0800 4 70 80 90

Abuse helpline:

• Domestic Abuse Support – 0808 802 3333

• National Domestic Violence Helpline (Women’s Aid and Refuge) – Phone: 0808 2000 247 or go to the website: www.womensaid.org.uk

• Childline (under 19) – 0800 1111

Self-harm:

• The Mix (ages 16 – 25) – Phone: 0808 808 4994 or go to the website: www.themix.org.uk/mental-health/self-harm

• Childline (under 19) – 0800 1111

Emergency:

• If it is an emergency call 999 (or the appropriate number in your country.

Please seek medical advice if you feel like you are in danger or need medical attention.

This article was written by Amy Ainsworth and originally published by the TED News Network, the official news service of the Trans-European Division of Seventh-day Adventists.

Photo by Lili Kovac on Unsplash

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This is a companion discussion topic for the original entry at http://spectrummagazine.org/node/9308
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It’s also time for Adventism to think of their physical buildings. I am scooter bound and was invited to the new member potluck, upstairs with no elevator!

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Yeah! This, for sure, is another area we need to think or know about in the church. In education too.

I would try and explain how it would be very helpful for you and overall a benefit to the church. The more inclusive things are the more things get done.

Hope all is well

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“If you ask if we are okay, unless it is genuine, our likely answer will be “I’m fine!” On the flipside, don’t be scared to ask. We understand.”

Many of us say we’re fine when we either don’t want to share with that particular person for a variety of reasons or when we just don’t want to go into detail. I’ve learned that with some friends I can push a little to get more detail, when I’m able to sympathize and encourage.That has often led to cherished friendships.

I agree there are many types of disability and of brokenness, visible and invisible, and that most people have something in their lives that affects how they experience life. But it doesn’t have to change our ability to live fulfilling lives. And we should never assume otherwise about ourselves or anyone else!

I agree about the lack of sensitivity about access to buildings and experiences. Not just for those who are wheelchair bound either.

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Interesting article with a delightful personal testimony. Thank you for overcoming and for sharing, Amy!

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Wonderful article, Amy, full of good info and personal insights.

I worked in the arena of Developmental Disabilities for many years and I learned a lot- as much about myself as I did about the “disabled”. What I learned was that we are all “disabled” in one form or another. It is humbling to know that we all are created imperfectly but still reflect the glory of God.

Much of what you have said about comments made by others towards you, the supposedly “disabled,” I have heard before as well. The best thing to combat some of the ignorance is education about the topic and then keep on educating! Most churches do not have the programs needed to accommodate physical/mental “differences”. Again, every member deserves some accommodation so that they can learn and give back in whatever way they can to the church community. We are all richer when all are involved and valued.

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I so glad that there are institution which discuss such issues, and instill hope into people. I hope that the rest of the church will follow suit, because there are so many people who would benefit from these seminars.

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My son had a congenital heart defect that had to be operated on when he was a month old. The church naturally prayed for him, which I obviously thought was a great display of solidarity, but upon the news of successful surgery, pastor blurted out something along the lines of “Thank God for answering our prayers and healing him. The prayer works”.

I know he meant well, but I think it’s most unfortunate that pastors pull stunts like that, which I find even more abhorrent than opportunistic use of family funeral as a place for “evangelism”. No mentioning of doctors who deserve the credit. No mentioning of research which went into discovering the problem and working towards solution. No mentioning of who knows how many children dying because no diagnosis or fix was possible. It’s rather simple. “Prayer works”. No explanation necessary as to what transpired. Apparently God was on hold until people prayed to make sure the surgery would go ok.

I’m forever grateful for the doctors who diagnosed the problem and fixed the issue. I’m forever greatful for people who invested time and effort into research that allowed my son to enjoy life instead of dying at the age of 2, which is what happened in the past when his condition would simply go undiagnosed.

I know that people mean well, but ignorance tends to redirect the causal understanding of reality and attribute success of the surgery to wishful thinking of certain people who don’t really move a finger to help.

And I do find it as extremely insensitive view towards disabled, because it’s implied that God can heal you, as long as the modern medicine can so the same.

As such churches tends to be a great breeding grounds for athesists who ask questions like:

https://whywontgodhealamputees.com

And a simple answer is that no matter what your pastor says about “the power of prayer”… That’s not how God seems to work. If he did, then I would be wrong taking my son to a heart surgeon.

So, please, next time you want to thank God for healing your common cold in 3-5 days to demonstrate how in favor with God you are, think about what you are really implying when it comes to disabled people in the congregation.

And for goodness sakes… Ask your pastors to at least mention doctors once in a while when they are in a “thankful to God” mood.

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Great point. I wonder if there is an opportunity to both praise God for his healing power manifested through conventional medicine, while at the same time being sensitive to those, who were not provided with those medical resources. Also, I think this is where we, as a church, need to take a more nuanced view of what “healing” and an “answer to prayer” means. Sometimes the secret to our success stems from what we perceive as weakness (“My power is made perfect in Weakness” -1 Cor 12:9)

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I am the author of this article and I agree with what you’re saying.

We do tend to hide how we feel but it is sometimes healthy and sometimes not, depending on who you’re talking to. It is healthy to share. It would be better with a friend.

I would totally encourage finding fulfilment in anybody’s life. It can be harder for the disabled, but I find they’re also more determined to succeed. To find a way to fit the world and themselves.

Working with churches for access or availability is hard but possible.

I find we are in agreement on most of what you have said. Thank you for sharing!

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Education is definitely key! Most comments are made out of ignorance. Teaching is needed!

Understandably, there aren’t programmes everywhere, but I find that if things don’t change the way you want them to, try to change it yourself.

Be the change you want to see!

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Amy, it’s great when writers participate in these discussions. I didn’t expect it, so perhaps you can share more as to what you think would be the ideal church setting in which wider range of people can have a voice in church?

I think the unfortunate byproduct of the “sermon-centered lithurgy presented by clergy” is sacrificing of a much broader view if both humanity and Christianity that all of the people in the congregation can contribute to if they really had a channel or opportunity to do so. Sometimes I would rather listen to a pastor reading (perhaps anonymous to begin with) letter of someone’s inner struggles, than another generic sermon about loving one another. We can’t really love one another if we don’t understand what people are going through. And we are not really taught to share our frustrations and accept some help in areas that we can’t be do it on our own. Likewise, I’m not sure we know how to adequately deal with people sitting next to you who are going through struggles. It’s awkward because that’s not what church experience is oriented towards today. It’s a place to come and be happy. It’s not a place to share sadness of other, even if it means it would make their struggles more manageable. But, I think that given the opportunity most of us would do it in a heartbeat.

Hence, we are taught to put on “I understand and agree with all of the doctrine” mask in Sabbath school as we answer certain trivia that makes us feel worthy. We put on a smile when we shake the hand of the greeter who smiles at us. The church is a happy place after all. It’s not a place to bum people out with your sappy stories.

Somewhere down the line I think we ended up overspecializing, and now it really is a tragedy that people that have so much to say, and who really need to say it… end up mostly listening and saying very little. Hence we don’t know the full spectrum of hurt in the church. The world normalizes hurt, because hurt in the world it is expected. I think part of being in a cardiology wing of the children’s ward really opened me to how much tragedy we never really see. All of the parents who were there and who were coping with unfixable issue of their kids, some sitting there in tears. Some have more hopeful state. Doctors said to us that if anyone got to pick a heart condiction for a kid… they would likely pick ours, and I understood what he meant when they fixed it in a single day. Trully amazing and priceless. But, the other side of that is that what we felt for about a month other parents get to internalize as they deal with unfixable issues for years, preparing for inevitable. And such pain becomes tragically “normal”. It has to be if one is to move on.

But we tend to swing the other way and overlook it all together… Or notice and accommodate it in a rather awkward “virtue-signalling super niceness” as you put it, or we are not really sure what to say around people who normalized certain suffering. Do we mention and talk about their struggles they are going through? You can’t really know what people need unless you get to know them really well. Yet, the current church mode doesn’t really present an opportunity to know each other well-enough.

And again, the tragedy is that churches today have pews facing the podium where pastors project “the voice of God” , and I really think that’s not where the voice of God is, at least not how I’m beginning to understand the concept in much broader sense.

You may disagree and find it as an " unnecessary nicity", but your article has more “Jesus” in it than most of the sermons about Jesus I’ve heard in the entirety of the past year. Hence, I think we tend to look for Jesus on the elevated podium and in a special setting of a formalized “suit and tie” speech. But, I think there’s much more meaning in suffering of other people that we can find immediate purpose as a piece of a puzzle that “fits” and brings joy and fulfillment to both parties. To know that we can be useful, and at the same time to know that perhaps the meaning of our suffering is for someone to discover and express their usefulness.

Either way… If I had a choice of 1 change to make to a church, it would probably be ditching the front facing pews and elevated podium configuration. Get people facing each other more (maybe a couple rows of 220 degree circle), and get pastor in the middle of people instead of far and above them. Use the back space for silent kids activities, or even let them be reasonably loud. Have pastor come down from the podium and sit among us - “the mere mortals”, and have some strategic breaks in a sermon to give opportunity for people to share their perspective on what was said. I think it would be a much more conducive setting for a church.

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I agree that many people hide what they feel. Over many years, I’ve learned which people can be trusted with my hurtful experiences, which ones would rather not hear and/or can’t cope with that kind of pain, which ones need understanding rather than hearing about my problems, and which ones are not trustworthy. Fortunately, I have friends of all types, so life is good.

Still working on helping people be aware of access issues. I’ve chosen my causes carefully, since no one can do everything.

Again, I really appreciate both your article and your responses. You’ve ministered to the Spectrum community in significant ways.

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It can be humbling to realize how our prejudices can be so hidden that we are unaware of them. And how important it is to try to put ourselves in someone else’s place. Thank you, Amy, for helping open our eyes and our hearts!

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