Mission, and dispelling the disability/ tragedy narrative

Anvil journal of theology and mission

Mission, and dispelling the disability/ tragedy narrative

by Kay Morgan-Gurr

“I’d rather be dead than in that.”

This statement is often thrown at me by people as they wave a hand towards my wheelchair. I’m not alone in this. Many people I know have similar comments made about their various disabilities. Friends with learning disabilities are dismissed with a “Well, they don’t know any different, the poor things,” along with “But I feel so sorry for their parents.”

Where does this judgement come from? Why do people think that it is better to be dead than disabled?

It comes from what is known as the “tragedy narrative” and it speaks into every stage of life where disability is concerned.

It speaks into life before birth. When parents find out their child will have a disability, the first thing they are offered by the medical profession is a termination. The tragedy narrative says any child with a disability will have no quality of life. This pronouncement is often made by medical people who have no lived experience of children with disabilities (other than in a medical capacity) and do not understand their worth or their quality of life. A friend who had a doctor that just could not understand why she was fighting so hard for the treatment her son needed asked some of her friends – me included – to write something about her son to show the amazing quality of life he had. She got the treatment he needed, but she should not have had to do this.

If the narrative of disability is only of tragedy, there is no worth. This is clearly seen in the prenatal screening now given to detect Down syndrome. Since this has been in place, terminations for Down syndrome have risen hugely and are regularly offered, along with much pressure to do so, right up until birth.

This narrative is also seen in the reaction of people to a child born with a disability – the “I’m so sorry” response when they learn the child has “something wrong with them”. Even as a 50-something I get the same reaction from people, usually said with a slight tilt of the head to the side along with a pained expression. My reaction is often, “Why be sorry – I get to sit down all day, and I can wear heels without fear of blisters and tripping over!”

Another reaction I get is: “That must be so hard!” The truth is, it wouldn’t be so hard if the world were more accessible and disability weren’t seen as the worst thing in the world.

Disability seems to be an upsetting and uncomfortable word for many people who have no experience of it. People try to cancel the word out and replace it with something more palatable because the word is just so… “tragic”. The phrase “differently abled” is from this stable, and it makes many disabled people shudder when they hear it.

This idea of disability being a tragedy also impinges on working or having a job. A friend on social media recently received private messages saying she must have been lying about being disabled because she had a job and disabled people don’t work. Of course, this isn’t true – disabled people do work. But I suspect the struggle for many disabled people in finding work is not only driven by fear and not wanting to make accommodations, but also this view of disability being so awful; because disability is so horrible you can’t work, and if you do work you won’t be good enough and need sick leave all the time. Statistics actually blow this out of the water. Generally, disabled people with the right accommodations have less time off, work longer and harder, and are loyal to their employer. I don’t see that as a tragedy.

Over the pandemic, many disabled people have been given “do not resuscitate” (DNR) orders without their knowledge. At other times, many of us have been asked time and time again about our resuscitation wishes. Sometimes this starts with, “Are you still refusing the DNR?”

Why is this? It’s that tragedy narrative again, where we’re told our lives aren’t worth living, so why should they bother resuscitating us? They think they will be doing us a favour.

The truth is, our lives have worth. I have a full life. I laugh a lot, enjoy a lot and I live a lot. Yes I have a job I love, but that shouldn’t be a measure of my worth.

All these reactions overflow into church life too. I’ll start with the elephant in the room: why do so many Christians chase after people with obvious disabilities and demand to pray for healing, or say awful things like, “If you trust in Jesus, you will be able to get out of that chair”? This tells disabled people that they are not acceptable to God unless they are cured. Now that IS a tragedy.

When disability is seen as a tragedy, and the compassion response is only driven by this narrative, disabled people will struggle to find their place in the church in the way that God intended. This will be the case for not just those of us with the noticeable disabilities, but those with invisible disabilities, neurodiversity, mental health struggles and more. Of course, when we don’t fit the narrative of “disabled person now fixed – job done”, we get a secondary tragedy to add to the list: our faith becomes the perceived problem.

We need to change the narrative.

Through my acquired disability, I have learned much. I have gained more than I have lost. God has been in that place with me, and when I am struggling with extreme pain, there is divine beauty in that place. As I’ve worked alongside children who have additional needs I have learned much. There have been many holy places as I have sat with them.

My own disability has been a bonus in many areas of ministry, but where it hasn’t, it has often been due to this view of disabled people only being receivers of ministry, not those who minister. Many see my ministry as awkward and even a “bad advert for the church”. Yet I believe my disability is a unique gift to ministry and something that God can use. Once again that tragedy narrative creeps in; I cannot minister as a disabled person because there is nothing positive about disability. Therefore I find few platforms I can access to preach and even fewer theology books I can listen to instead of read.

My journey with disability began when I was 14. I didn’t know at that point I had a genetic condition that would rear up and bite me later! I was asked to “help” on a church camp for young people with disabilities. The language was very much around “doing to”, not with or alongside. This was about pity and doing something about it. The word “tragic” was constantly in the background. I even won an award for “helping on a camp for ‘handicapped’ children” from a para church youth organisation! The bus journey to the campsite soon bashed the saviour attitude out of me. The girl I was to “be responsible for” quickly became a friend; she taught me much and set me on a path of ministry that affected my whole life. We were equals. I made many other friends on this camp who have continued to teach and influence me and helped me on my own journey with disability. I carried on with those camps for years. By the time I stopped, the tragedy narrative was nowhere to be seen. But it reappears without fail when my friends try to enter our churches.

Throughout society, including our churches, the narrative of tragedy filters through everything. It’s like a water leak that can erode tiles, ceilings, floors and concrete – it affects everything. It may not look like the culprit, but there is always a channel back to it.

As a church we need to shift our thinking and change the narrative. Why are children with disabilities and additional needs never mentored – especially for leadership? Why are disabled people often overlooked for ministry roles? This is just one area where we need to change the narrative.

Disabled people should be seen like any other. They should be in leadership roles; they should be teaching our children, leading mission teams and allowed to be on the mission field. This not only gives worth and dignity but dispels the myth of tragedy. It also shines a light to the rest of the world about how we value the voice and the presence of disabled people in our lives and our churches.

About the author

Kay Morgan-Gurr is co-founder of the Additional Needs Alliance. She is a visually impaired wheelchair user and used to be a children’s nurse specialising in additional needs and disability. Kay has been in ministry for over 27 years, initially working with children and families, but now works as Pondering Platypus Training and Consultancy. She works alongside many organisations as an advisor and trainer, and is a writer for Christian Today. She is married with two grown-up stepsons, loves real decaf coffee and does rather a lot of knitting and crocheting! She tweets at @KayMorgan_Gurr.

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