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True accessibility

“True accessibility means meeting people with disabilities where we are — not trying to change us, but making room so that we can be wholly ourselves as God created us to be,” writes Hunter Steinitz.

Made in the image of God

I grew up in a small Presbyterian church in Pittsburgh, Pennsylvania. I loved going to Sunday school and singing in worship. I played alongside other kids my age. And I was the only kid in the entire city who looked like me.

I was born with a life-threatening skin disorder called harlequin ichthyosis (HI). My skin looks bright red, is very flaky and requires daily bathing and ointments to stay healthy. It affects other parts of my life too. I am gawked at when I enter public spaces and often receive unwanted comments and questions from well-meaning strangers. My church was one of the few local places I could go as a child and not be stared at. These people knew me and saw me as just Hunter — not as “Hunter with the red skin,” but as my whole self, skin and all.

Despite the safe harbor of my church, I still grew up looking different from the other kids and had to wrestle with all the social trauma that comes with that. I am deeply familiar with doubting my own self-worth. Whenever I do, I return to Genesis 1:27: “So God created humankind in his image, in the image of God he created them.” We are all made in the image of God, every single one of us, even those of us who wrestle with our bodies or whose minds work differently — whether we wear glasses or carry a cane, use headphones in loud spaces or need access to a sensory room.

Everyone internalizes the idea of being made in God’s image differently. Often we think of bearing God’s image in the abstract. On a grand scale, we know that everyone bears the image of God. Yet when we come face to face with something entirely different from what we call familiar, we struggle to recognize the image of God in that difference. I’ve wrestled with the picture of myself that the world shows me, the image where I didn’t belong, where I wasn’t supposed to be. Then I look at that verse and am reminded that I am created in the image of God too, HI and all, just as you too are made in the image of God.

My condition is genetic, meaning that it is woven in the very fibers that make up my being. God made me this way, and I am made in God’s image. I stress this point because so much of our common cultural understanding of disability and additional needs is that the person would just be better off if they didn’t have to deal with their disability. Make that go away, and the person is right as rain. But if you were to take my condition away from me, you would also take a huge part of my identity with it. I have met so many wonderful people, experienced amazing things and gone to awe-inducing places because I live with HI. I am the person I am because of my experiences with HI. I don’t know who I would be without it. I am whole, even with my condition.

What is accessibility?

For those of us who live with chronic health conditions, accessibility is crucial to how we interact with the world. Oftentimes our bodies don’t fit the molds that the world has premade for us, and we are left to carve out our own space. I am quite familiar with needing to carve a space for myself. And while I have learned to be flexible and react to my body’s needs, I often have to move through the world as though it will not adapt to
help me.

When I think of an accessible faith community, I think of a place like my church: one where people can come and not have to apologize for being themselves. And while my community was accepting, I was still very lucky. When I was born, doctors estimated that I would not live to see my first birthday. Even if I did, they said that I would not be able to walk or talk or function without help. I have survived by the grace of God and through the persistent support of my family and friends. I didn’t need a wheelchair in my daily life, nor did I need a sign language interpreter to understand what was going on around me. My faith family needed only to adapt to my appearance. 

While I found a place that had room for me, that room was not easy to come by. It took time, intention and willingness from the community around me to make that room. I didn’t know it, but I needed them to carve out a space that I could inhabit.

The act of making space for people with differences is accessibility.

When most people think of accessibility, they think of ramps, elevators, handicap parking spaces and other such physical accommodations. Those accommodations are the entry point to deeper accessibility. They allow a person with mobility challenges to physically enter and move about a space. But accessibility is so much more than just being able to physically inhabit the same space that people without mobility challenges inhabit.

Sticking with examples of entry-level accessibility, consider measures like the inclusion of American Sign Language interpreters, earpieces for those who are hard of hearing, large-print bulletins, quiet sensory rooms, and posters about the top eight allergens at any gathering involving food. These simple measures make it so much easier for those of us with additional challenges to feel comfortable engaging without fearing that we will be forced to not participate because there is no room for us. And the faith community can make it even easier by openly communicating that these adaptations are being made, whether on the website, social media or event posters. That way, we who face these challenges can see at the outset whether we can participate in this activity if we choose to do so. Yet being able to inhabit the same space and engage with the same material is only the starting line. If the church really wants to be an accessible faith community, it must think deeply about making space for those with additional needs both theologically and socially, as well as physically.

I am just one person in the disability community. Like any group of people, people with disabilities hold different understandings. While I deeply identify with my condition and the effects it has had on my life, other people very much want their disability to disappear, and others have other feelings based on their experiences. The disability community is not a monolith, and my reflections here are based on my lived experiences and perspectives.

How do we talk about healing?

Given that I identify with my condition, I want to look at how the church talks about Jesus’ healing narratives. So many people of faith who have disabilities cringe every time a healing narrative is the sermon text. Whether a church means to be accessible or not, how it speaks of the people in these stories tells those of us with additional needs what the church thinks of us. Most of the healing narratives in the Gospels are missing a key voice: that of the person receiving the healing. Often we are told that people who have been healed rejoice and praise God, and then they disappear from the narrative without ever telling us what they went through. Because we don’t get to hear the experiences of those healings firsthand, we are left to fill in the gaps ourselves.

I have had countless people of faith approach me in public spaces to ask if they can pray that I would be healed. I’ll usually let the person say their prayer and go along with my day. While I don’t believe that God is going to heal me, I do believe that these people of faith are doing the only thing they can think to do to help me at that moment. Many people with visible disabilities experience such social encounters to some degree, and these gestures can come off to some as aggressive and hurtful. In these moments, the other person assumes that I cannot be complete in myself – cannot be touched and known by Jesus – and still be as I am. I think that the community of faith needs to step away from the assumption that people with disabilities need to be healed in order to be whole.

When Jesus heals someone in one of the healing narratives, what about that individual’s life changes? The most obvious answer is that they are no longer suffering with their disability. But that’s not all. Jesus is also reconnecting that individual with the society and community around them. Living with conditions that force us to make adaptations in order to survive is inherently isolating. The world is literally not built for us, so we have to make accommodations.

Jesus, in these healing narratives, is doing what he can in that moment to bridge the gap between the individual and their community. The biggest barriers that stood in the way for the individuals in these narratives were not their medical conditions; they included the social and cultural rifts that separated them from their communities as a result of those conditions.

When the world views someone as incomplete, it can treat the person that way. So much of living with a disability requires facing the challenges that come with needing to move through the world differently. Accessibility is not just about wheelchair ramps or automatic doors. It is really about loving our neighbors and making space for them at the table. Sometimes that means having Bibles or bulletins in braille so that those with vision impairments can follow along. At other times, accessibility means being aware of allergies and planning community meals accordingly.

Just as our bodies vary in shape, size and form, so too do our minds. People whose minds think and operate in different ways are called neurodivergent. We often think of there being one “normal” body or mind and anything outside of what we call “normal” is somehow bad or broken. However, those who were born different, who sit outside the “norm,” are made in the image of God as they are. They don’t see themselves as needing to be fixed but are waiting to be embraced as their whole selves. If the church wants to be accessible, we must be willing to listen to the people who we want to include in order to understand what is needed. If those you want to include are not part of the discussion, you are not including them; you are dictating to them. Accessibility is an ongoing conversation, not a one-and-done activity. It is a conversation that requires listening to the needs or concerns of our siblings in Christ and responding.

Accessibility always involves thoughtfully meeting the needs of those on the margins so that they don’t have to do the legwork every time in every place for every event. Living with a disability is isolating and exhausting. There is so much ground that we have to plow ourselves because no one is going to do it for us. Or at least that is what the world tells us. But what if there was just one place where we were loved enough that we didn’t have to do it all ourselves?

There is a place where the hungry are fed, the oppressed are set free and the lonely find community. It is supposed to be the church. Yet I have only been in two church buildings whose design would allow someone in a wheelchair to reach the pulpit. If the church wants to be an accessible faith community, then it needs to listen to the voices of those on the margins. That means giving them room and freedom to speak about their experiences. It means setting aside discomforts and weathering inconveniences in order to better love our neighbors. Loving our neighbors as we love ourselves is the central teaching of Jesus. Yet more often than not, those of us with disabilities are told that we are incomplete if we are disabled — and we hear it from faith leaders.

The community of faith can do so much better. The church can meet people with disabilities where we are, as we are, and love us. The community of faith can open itself to listen to the hardships and difficulties that people with disabilities face and then work to help us not have to face them alone. The church can be flexible, allowing the boundary of the community to expand beyond those who are physically present on a Sunday morning. Loving our neighbors as ourselves means expanding our awareness to consider the needs of others so that all can participate in and alongside the community.

True accessibility is making room for those with additional needs within our communities: physically, theologically, socially and culturally. That means meeting people with disabilities where we are — not trying to change us, but making room so that we can be wholly ourselves as God created us to be. And when we all journey alongside one another, we find that we’re not really all that different