Thoughts on Privilege & Understanding my Health

This week our friend Laura is sharing with us. She has struggled with her health for over a decade, and has shown exceptional resilience in difficult seasons. We’re so glad that she is sharing some of her hard-earned wisdom: an important message about able-bodied privilege.

If you’ve ever been in a debate with me then you’ll know that I’m usually fairly confident in my own opinion. But I feel very tentative about this post. It feels like a big ask, to write on able-bodied privilege for a blog that is written by two of the most thoughtful, wise and compassionate Christians I know. When it comes to disability, mine is by no means the only voice. There are a multitude of different voices, opinions and beliefs about what disability is and what we can do to combat it, and if it needs combatting at all. Not only that, but given that this blog is about faith, I feel I should point out that I’m not even sure I have faith anymore. Perhaps this is a good a time as any to reflect on one of the reasons for that.

My first year at university was the first time I felt truly free to serve God. I had not long ended a relationship in which I felt I had to choose between my boyfriend and my faith, and I was living away from home for the first time. I threw myself into the church and Christian Union, and strived everyday to honour and serve God. I strived to live out the Christian saying that JOY is found when you put Jesus first, Others second and Yourself last. I would stay up until the early hours of the morning to help people or talk to them about God before getting up first thing to hold a prayer meeting on campus. I rarely stopped, and I felt a constant pressure to evangelize for God. I wouldn’t go as far as to say that it was this constant striving that led me to become ill, but I certainly felt like being ill was in God’s plan for me. Although I was frustrated, exhausted and in pain, I felt a peace and an assurance that me being ill, housebound and incapacitated, was God’s way of telling me to slow down. That He loved me in the stillness and the silence. I didn’t have to keep striving to be a “good Christian”, I just needed to be.

That feeling and faith lasted a good few years. But my illness has lasted longer. I struggled with the depression and anxiety that comes hand in hand with being housebound and chronically ill, and I was all but cut off from the church. There were, and are, a few Christians who loved me and supported me and kept in touch. But over time, I was more and more alone. My faith got harder and harder, and I felt so incredibly let down by God’s church that when I did go, I would have to leave the service and cry in a quiet room. I thought that grief would pass, but it didn’t. And, with my health still very variable, and only being able to go to church occasionally, I faced exclusion and discrimination from pastors who saw me as lacking commitment to the church. One particularly horrible time, I had phoned up a church in advance to try to figure out the easiest way for me to participate, because services that are loud, long and hot would leave me feeling faint, sore and exhausted. The pastor and his wife came to visit and proceeded to talk over us, ask us questions that they weren’t interested in the answers to and concluded that we needed some sort of help that they didn’t have the resources to provide.

I believe that their opinion of me, and the way they approached that situation, came from a place of able-bodied privilege. They were able to explain my negative experience of church as a chronically ill Christian through their belief that I was the problem. They saw that being ill had left me bitter, and in need of specialist support. In that scenario, the problem was not one of accessibility, but of focus. Their church had chosen to focus its time and resources on families, and had to prioritise where to focus its outreach activities. I feel like that is the able-bodied equivalent of mansplaining, when someone who doesn’t understand your experience of your own body, assumes that their knowledge of your situation is superior. I think it’s easy to underestimate the power that lies in that assumption. The power involved in overwriting the knowledge of a hugely diverse group of people, just because their bodies don’t conform to an able-bodied norm.

I wish I could put that experience down to a lack of compassion or love coming from the individuals involved at that one time. But I have had similar experiences, again and again. During my undergraduate degree there were many times when I would try to address barriers to my participation, from inaccessible classrooms to inflexible deadlines. And there was many a time when I bumped into people in authority  (usually, white, straight, physically fit men) who wrote over my experience and knowledge with their own. The solutions, therefore, were simple. I should try harder, organise better, start earlier, and do whatever I needed to do to overcome these barriers. This was a theme that came up frequently in my undergraduate research with students who were also trying to arrange support and reasonable adjustments for a disability. In order to access these adjustments, we faced individuals who would decide what support and adjustments we should have. The burden of proof was on us to show that our need was real; that our problem was due to disability rather than character or work ethic.

This burden of proof does not just restrict me in a physical or institutional sense, but it also shapes and changes me. It affects how I relate to my own body, how I relate to others. Along with frustration, exhaustion and hurt, there is self-doubt. My condition is not an easy one to manage. It takes a lot of energy to be constantly analysing your body and its responses to different environments and activities. It takes self-discipline to constantly make good choices. And I don’t always have the energy or will to make those choices. I don’t always know the right way to balance how much my six year old needs me against our need for clean clothes and clean plates, how much uni work I have to do, and how to look after my body. I don’t always want to do the sensible thing. And so, when you are facing a constant pressure to act and behave just like an able-bodied student, it’s too easy to feel like a failure before you’ve submitted any work. It’s too easy to doubt the way you are balancing all the different pressures you face. It’s too easy to push through and try to conform, before your body forcefully reminds you why you can’t. But empathy can be as transformative as ignorance. Individuals who listen, who practise empathy and who take you seriously can reassure you that your health is more important than the requirement to conform to normal practice.

Unfortunately, people who are able-bodied are much more likely than disabled people to be in positions of power. They are more likely to be leaders in church, in work or in politics; and that reinforces the lack of attention to making everyday places accessible. In order to tackle that, to address it, we need people who are willing to listen. People who are aware of their invisible, able-bodied privilege, and willing to listen and to see the barriers that are only obvious to the people excluded by them.

The good news is that there is as much power in listening and taking people’s own accounts seriously as there is in dismissing them. Every instance where someone’s experience can be overwritten is also an opportunity to truly listen and gain understanding and empathy. An opportunity to move towards accessibility and inclusion.

This post is part of our series ‘Unpacking Privilege’, click on the links below to read more.

Introduction: Unpacking Privilege

Thoughts on Privilege, Gender & Weddings (Guest Post)

Unpacking Privilege: Gender

Thoughts on White Privilege in South Africa (Guest Post)

Unpacking Privilege: Race

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