Lent lunch: challenging our perception of a 'welcoming community'

Originally presented to Bearsted Methodist Church as part of their 'Lent Lunch' series. 29.3.19. 

This differing perception in autistic people is around two main areas: differences in how we communicate, and differences in how our senses work. It’s important to say at this point that the way we perceive the world is not less, or broken, or deficited. It just is.

This is probably where I will break away from what you are expecting me to say, or would like me to say. But this is all necessary when considering supporting autistic people in a church setting. The weight in the language we use influences our view of autistic people, which inadvertently influences the support we give. We can’t help it, we’re human. You might think it’s just words, but I would argue that words have power.

And this idea that autism is a spectrum - yes it is. But I do not believe it to be a linear spectrum, where we compare how disabled people are with each other. Functioning labels are problematic - they stem from eugenics and judge upon outward appearance, when being autistic is such an internal experience. Autistic writer Donna Williams (1996) spoke about this in her book Autism – an Inside-out Approach: An Innovative Look at the Mechanics of Autism and Its Developmental Cousins, yet is so greatly overlooked. I prefer and encourage the use of the term ‘support needs’, which is much more holistic and fluid in its meaning and acknowledges that some support needs are not external.

Autistic people don’t have a look or always appear to be a certain way. We are not all white, male and children. We aren’t all computer nerds. We aren’t all robotic in speech and we are not all uninterested in people. Research has found that autistic people do want friends, even if these friendships look different. Being socially included and belonging is a need we all have, irrelevant or our neurology, it might mean though that it might look different in multiple ways. And if we want to bring theology into it, it’s the people that make up the church, and ministers and theologians have commented that a church is an empty church without disabled people. This shows how important the meaningful inclusion of autistic people is in our churches.

And I guess meaningful inclusion is part of the answer to the brief I was originally given, of ‘how to support autistic people’. There is not one size fits all in how to support autistic people, because some of our needs are not all the same and we have not been socialised in the same way. Some of us might also have a learning disability, some of us also have a specific learning difference like dyslexia, some of us have other mental health needs. Autistic people do not sit in a box on their own, autism is highly intersectional. That’s some of the reasoning why you cannot fit us into a categorised box, however that doesn’t answer the question of practical things we can do. That’s what I know people are after. However, practice and ideas are intrinsically linked so they need to be looked at together.

For example, the sensory environment of a church might be one aspect that may be difficult for some autistic people. It might be noise, smells or bright lights. With the move towards ‘relaxed cinema performances’ I am surprised that churches have not seen the benefit in looking at the sensory environment. But it’s not that alone which needs tackling - no, because we all have different sensory needs. And this is where it gets confusing. It requires getting to know the individual autistic people that might come into your church, and the wider congregation, and making ‘church’ welcoming for them. This isn’t around preferences, as many people do assume in the first instance. This is around needs and distress. You wouldn’t tell someone with a broken bone to stop making a fuss. This is the same.

It is physically painful and jarring to be overwhelmed by sensory input. It’s not like your typical pain, it’s a completely different sort which words cannot do justice to. It’s nothing like pricking your finger or breaking a bone. I've broken bones, so I know what I'm talking about.

This is where communication is important and finding out what what adjustments are needed. And I say adjustments purposefully, as accommodations hints that autistic people are outsiders of the church, and that it is not their church. Communication might be with autistic people, our families or people who accompany us to church or our friends. Out of this communication may come many solutions or things to try: members of churches helping families out, adapting Sunday school materials or activities, having an order of service so people know what to expect, relaxed services… This is maybe what I was supposed to say and perhaps what was expected. This outcome will look different in each case. We need to remain open in our perspective and thoughts towards disabled people as a whole. We are not less, nor not of value in the church. Sadly many of us have been hurt before by poor thoughts and poor theology, where people have tried to help but it has backfired. I know I have been. It’s pushed me, but I refuse to leave as I’m stubborn and know the record needs to be set straight.

And this is maybe the most important thing which I think can help welcome autistic people, neurodivergent / disabled people, among other groups of people: reflection on how we think about people and how this impacts our action. Because it does. Maybe now is time that we need to look at what we think of autistic people - all autistic people, as I cannot possibly represent everyone - and challenge notions that autistic people are to be pitied on, are less, are broken. If we are all made in God’s image, as in Genesis, then surely we should take that on board. How much of what we consider to be human is what society tells us, or what Jesus tells us through sentiments like ‘love your neighbour’? And love isn’t just patting someone on the head, rather love means the hard work of looking at multiple options. This sounds very utopian, and I’m very aware of this. It is hard to always include everyone. But I would like to posit the challenge that we need to try out of love, which is a responsibility and a command for Christians. Sometimes it might mean us asking for help from other autistic people or our allies (which are always a good port of call). Sometimes it might involve tapping into our own networks we know. Sometimes we might not get an answer immediately. Sometimes we do. Sometimes we need to use a mixture.

I’m not your tokenistic autistic to help your EDI data, but I am committed to getting churches into a place where those who have been excluded, not just limited to autistic people, to feel more welcome. I’m committed to challenging the status quo of why this might be, even if it makes us uncomfortable. For after all, being a Christian is not easy, neither is it supposed to be. I know not everyone will agree with me. I don’t expect you to. However I also know that church is supposed to be for everyone who wishes to go, and not restricted by attitudes of other church members or goers. And this self-reflection and understanding of what inclusion and love is, is so vital to welcoming autistic people.

Connecting co-production and religious groups: TTFD

Thought for the day originally published 17.3.19

I have to admit when I was planning this thought for the day I was a bit stumped what to focus on, and given the monopoly that Brexit is currently holding in our conscious, I wanted to steer clear of it. The fact I have a particularly strong opinion on the matter also impacted this decision.

Amongst the current news items, I remembered an article I co wrote with two fellow students at the University of Kent, Lily Dedman and Kyla Greenhorn, on why disability history month is important to us. Disability history month is an annual selection of events, often held in universities. The idea behind it is the struggle that disabled people face when fighting for equality and human rights. In our article we wrote about the commonalities in our experiences as disabled and/or neurodivergent students. We are not disabled in the same way, however we all face barriers which are thematically similar, including a lack of understanding, being ‘pitied’, seen as ‘an inspiration’ for just living and being, and our fight for equal access to various aspects of society.

This got me thinking. Where do religious communities, and communities associated with belief systems in general, fit into this dialogue? I mean, we have straplines broadcasting that we are ‘inclusive’, ‘welcoming’ and ‘open to all’. But are we really? And if we are saying these things, are we saying these things because we are ‘inclusive’, or because we want to be? Are we checking with those we are saying we are welcoming, that they too feel welcome? I can’t help but ask these questions of the situation, both as an academic and as a neurodivergent person who has experienced exclusion myself in various scenarios.

Taking a Christian slant on it, I think Galatians 3:28 is pretty fundamental in teaching about inclusion: ‘There is neither Jew nor Gentile, neither slave nor free, nor is there male and female, for you are all one in Christ Jesus.’ Therefore if we are all one, we should be seeking to make sure that all are heard and all who wish to access and participate, can. I also think we can take it one step further. We can engage with, and actively listen to, the voices of disabled people and their experiences of Church and community. Rather than try and squeezing everyone into a ‘bums on seats at 10.30 am with band at front’ approach, we can re evaluate what we mean by church and self-inspect our attitudes towards disabled people, as research reports attitudes of others impact experiences of church. If we are all one in Christ, then therefore we need to evaluate dynamics of power and the attitudes we hold towards others.

In the article I co wrote with Lily and Kyla, we wanted to present the ‘disabled voice’, or in plain English, put our words onto paper and get ourselves heard as a collective. Communities associated with belief systems need to listen to the voices and experiences of disabled people, and truly take them onboard, for a tentative first step towards a complete body and community expressed on Earth.