Being the Disability Prop: Why I stopped going to Church
I was raised Pentecostal in a very Christian household. For many years it was a huge part of my life, and in a way, it still is. I made some great friends through church and had a safe space to grow, develop, do community work, practice musical instruments and much more. It was a really happy time for me. My troubles really came with trying to mesh my disability identity with religion. I still have some huge questions about this, and whenever I research I try to research faith and disability so I can understand my place in the world but growing up it didn’t make sense.
Pentecostal churches are full of healing. It’s the reason for their being. They believe in the healing power of God and the power of prayer amongst other things. If you don’t know what I mean about Pentecostal, look at any pop culture reference to the ‘black church’. Hand clapping, gospel choirs, fantastic music and an enthusiastic preacher speaking tongues? Check. As time has gone by I have probably convinced myself this happened more than it actually did but it felt like every single Sunday at the end of the sermon the pastor would do a call to either give your life to the Lord or come up for healing. Almost every time, some well-meaning sister or someone or other in the church would tap me on the shoulder and stage whisper, “WHY DON’T YOU GO UP FOR HEALING TOO?!”
I’ve chosen to believe it was well meant but I very quickly grew tired of having to go to the front to have someone pray for me and wander back to my seat feeling exactly the same. Sometimes we’d get a guest preacher raining down heavenly exhaltations wanting me to sprout two heads in front of their eyes or something, other times it would just be a quiet “Do you feel better now?”. No. The answer was no. Or maybe it worked. Maybe I was so used to being put in a position where I had to fulfil their belief that God was a healing and kind God that I just nodded yes and then sat down in my seat knocking back ibuprofen and cocodamol. It’s an odd position to be in, when adults and established preachers are resting their affirmative needs in you. It’s not exactly the environment to go, “Soz mate, didn’t work,” when you’ve got a whole room full of people waiting to say Amen. The truth is that God doesn’t always show up on demand when you expect him to, but the collective church can’t face that.
For some reason, I became this symbol for “NEEDS HEALING”. I always had trouble understanding this. I have a genetic condition, does this mean that my genes are wrong? So, was I or was I not made in God’s image. I didn’t consider myself sick. Have a banging headache? Yes, I could go up for prayer because that is something that could go away. My joint condition isn’t. It is a part of me. I have had experiences that have shaped and developed me and made me the person I am today because of what I went through. Do you think I would be this fantastic if I had never had to go through some trialling times? Nah mate, I’d be playing netball and probably wouldn’t have developed the same concern I have for others because of what I have learnt about the world. Every time you were sending me up for healing, you were telling me that there was something wrong with me.
I’ve discussed the idea of healing with my dad, and to him, it’s about faith. There’s a core belief that healing rests on — that God can do anything. We were talking about the theories coming from the Australian pentecostal church that say we should come to understand healing as ‘wellbeing’ as opposed to the traditional understanding and in a way, that we shouldn’t expect so much from God. There’s another part of Christianity that basically means it’s your belief and faith that makes miracles happen, so essentially either you believe in the power of God, or you don’t. Either God can heal, or you believe he can’t. And if you believe God can’t heal, then you don’t believe in the power of God, as faith is built on the premise that God can do anything. I once had someone tell me that I wasn’t healed because I didn’t believe enough.
So, in the stage of the Christian faith I felt like my disability and existence is the problematic prop that challenges them about some very core beliefs. I’m like that guy who sits next to you whilst you’re watching Doctor Who and explains why everything you’re seeing on screen couldn’t happen. It leaves you in a strange place when you attempt to explore your faith. I don’t have time to go into it, but as far as I can tell Christianity and traditional readings of the bible are absolutely horrible to disabled people. I’ve come across some more modern readings that challenge this but the failure to be adopted by the wider church leads to me make this conclusion. Having said all of this, I can’t fully discount the idea of faith and the existence of God. Let me tell you why.
In sixth form, I had a particularly difficult time with my body. This was between the ages of 16–18. The osteochrondomas on my knees had been giving me trouble for years but they had reached the point where my mobility was seriously reduced, I was wearing bandages on both legs from my ankles to above the knee and I couldn’t walk to the end of the street without needing crutches. At the same time, the osteochrondoma on my shoulder was causing me excruciating pain, meaning I had to really limit the time I used crutches so I didn’t make my shoulder worse. As a result I had lost a lot of independence. I couldn’t spend much time outside of the house and big decisions were on the horizon. Is it time for me to get my wheelchair? I was thrilled at the idea, less pain woohoo! Physiotherapist Father said no, as reducing my movement would mean I’d lose the little flexibility I had. It was clear I would need surgery, but Nurse Mother said no, because not yet and there might be a scar and other medical reasons that I forget.* I was due to go to University the following year and surgery on both knees and my shoulder would mean that only my left arm would be discomfort free. I could potentially lose out on going to university altogether. I was only studying Art & Music A-Levels (something I’d need my arms for), so if I didn’t go that year, the whole venture fell into doubt. If you’re studying Art & Music, you don’t really get a fall back plan academically. As luck would have it, my health did get worse so it really mattered that I went to university when I did.
April 2nd 2008, there was the Lakeland Revival. Todd Bentley led an internationally experienced time of powerful ministry, and the whole thing was broadcast on God TV. I was sitting in my living room with my parents. They were watching it, I was doing some A-Level coursework because life is hard and society says those exams are necessary. I wasn’t paying too much attention but at one point the speaker said to touch the tv to access some of the healing. My parents are of faith so they did, and I basically thought — it can’t hurt. Shortly afterwards, the speaker said “Someone’s just been given two new knees, not one, but two.”
I thought that was a bit weird, and just carried on with my business. My parents entered a time of prayer and my mother came up to me and said, “Hannah, your knees are shrinking!”. If you’ve met my mother, you will understand why I presumed she was talking nonsense. However, about fifteen minutes later or so both of the osteochrondomas on my knees shrank before my eyes. They didn’t disappear, they are still there but to this day I have never experienced the kind of debilitating pain I did back then.
Obviously, I thought I had dreamt the whole thing, because it’s really hard to believe in healing like this. And I looked for a medical reason too. Osteochrondomas have been known to spontaneously resolve themselves. It’s rare, but it’s not unheard of. So, I could put it down to that. Later that same week, I went to the cinema with my boyfriend who looked at me and the following conversation ensued:
“What happened to your knees? Weren’t they bigger?”
“Yes, they were.”
“So what happened?”
“They got smaller.”
I’m very wary of talking about this experience in terms of healing but one of the things I take away from it — the osteochrondomas didn’t go entirely. I still have them. I didn’t suddenly have a completely biotypical skeleton. I am the way I am supposed to be. If you look at it religiously, God removed my pain. There’s a whole other discussion about God, disability and pain! If you held a gun to my head and asked me what I believe, then yes I believe in God. I choose the Australian theories that highlight wellbeing and a better understanding of healing because I think it is healthier for disabled people and allows a more inclusive practice of faith. It is possible to be disabled and a Christian but healing is a huge barrier. People often talk about the barriers for disabled people in access to work, or buildings, or benefits but we need to talk about more. We need to investigate the barriers that exist in accessing culture, family life and faith.
- [Edit] I remember now. Her reasons were that after spending near on 20–30 years in the NHS they had seen enough operations to know that things can go right and they can go wrong, and there was no guarantee I’d be better after the surgeries.
Being the Disability Prop: Part II
