Disability and Religion
For years I didn't actually refer to myself as disabled. I refused to. Why? I didn't like the implications it had. Saying that I was disabled meant admitting that I couldn't do what everyone else could. It also meant admitting that it was permanent. Admitting that my entire life had changed and that now I was a different person, not only different but less than I had been before.
When I was younger I was a very different person. It may seem strange considering how little I do now, but I used to do an awful lot when I was growing up. I did ballet, highland dancing, figure skating, kayaking, skiing, horse riding, hill walking, pretty much anything and everything I could. That was until I was 14.
I was training for the duke of Edinburgh bronze medal. I had already met the requirements for the community service section and the sports section. All I had left to do was the walk. So I was trying to get my fitness up, walking home from school instead of getting the bus. I think it was about three miles. I didn't do it every day, but every couple of days with my rucksack full of books and stuff.
I also signed up for a series of school trips to train for it. On one these trips it started. We were about half way up the hill when I began to feel incredibly dizzy and very tired. But I kept going because even then I wasn't very good at admitting that I couldn't do something. So I kept going until suddenly I couldn't move and I collapsed onto the ground. I can't really remember much else from that day; I have huge gaps in my memory from back then. I know that a friend of mine elected to help me back down to our dorm room instead of continuing with the walk, but only because I was told about it afterwards. There is however one thing I remember clearly. I remember the teacher we were with telling me to stop being ridiculous. She thought I was faking. She apologised for it later, but it always stuck with me.
After that I couldn't do anything, I was completely housebound. I lived between my room and the sofa downstairs. It used to take me half an hour to get from my room at the top of the stairs to th3 downstairs hall, and then I had to hold onto the walls to get through to the sofa. Everything was a monumental effort and the only way I could leave the house was in a wheelchair.
That's when I noticed the difference. People have a tendency to forget about you when you're not there. I've been asked before if I was ever bullied at school because of my disability. But I never was. I wasn't there. Even if I had been I doubt anyone would have said anything. It was alright to pick on someone because they were English or because they were Pagan. But disability was out of bounds. It's the same reason that people avoid looking at you. It was the first thing I noticed when I went out in the wheelchair. Nobody looks at you. In fact most people will look anywhere except at you. And really I shouldn't have been surprised. People are always told not to stare, so they don't. They turn a blind eye, because disability makes a lot of people feel uncomfortable.
The same thing still happens to me now, but in a different way. When it's busy on the underground and I have to stand I am ignored yet again. Everyone on the train will avoid looking at me, because if they don't see me and don't acknowledge my presence they won't have to offer me a seat.
The second thing that I noticed was that no one speaks to you, not if they can avoid it. I would go into a shop with my mother or my sister pushing me in my chair and all questions would be directed to them. In sickly sweet voices the clerks would ask what 'she' wanted. Despite the fact that 'she' was perfectly capable of answering on her own. That's why I eventually persuaded my mother to get a wheelchair in which I could push myself. I still went into town with others but I was able to maintain my independence and prove that I was perfectly capable of doing things on my own.
Maybe I'm just paranoid. After all we live in a much more tolerant society, don't we? In fact as a society we pride ourselves on our tolerance and our understanding. Well one weekend my sister Sam borrowed my wheelchair and went into town. She hated every second of it. She noticed the same things that I did. In fact when she broke her leg a few years later she used my chair again and found the same things.
Some people didn't treat me differently. I learned very quickly who my friends were. The bus stop for the school bus was very near my house and every day at about 4 I could hear everyone coming home from school. It was a daily reminder of how isolated I was and what I was missing out on. But occasionally my friends would stop by on their way past. They would come in for a couple of minutes, just to say Hi and to see how I was doing. And at weekends I would get visitors, they would take me out in the chair, just round the village. But it was enough.
And my sisters were great. They didn't treat me any differently, aside from talking quietly and letting me sleep. Most days when Sam came home from school she would stop by the shop on the way home and get me a bag of rhubarb and custards and a bottle of red cola. She even snuck some in for me when I was in hospital. She's a carer now and looking back I shouldn't be surprised. And Dani, Dani would sit and watch films with me when everyone else was out. I remember that at one point I went to stay with my Dad in Munich while my mum and sisters were skiing in Austria. One day during the trip dad and I went over the border to see them and Sam was put in charge of keeping me company. Well one of the first things she did was manoeuvre my chair towards this ramp with a snow drift at the bottom and push. The fact that they didn't treat me any differently actually helped. It didn't matter what else was going on I was still Charli. I just had wheels and needed to sleep a lot.
Historically it isn't surprising that people with disabilities are still seen as different. The classical world for example were obsessed with physical perfection. Any child born with a deformity of impairment could be seen as a bad omen. We've all heard stories about the Greeks leaving new born babies on mountainsides or in the woods to see if they would survive and in Rome the father's right to kill their own child was protected by law. Of course people don't things like that anymore. Except there was a very interesting documentary that my sister Dani told me about. It was called 'after the apocalypse' and was about the people of Semipalatinsk in Kazakhstan, who were used as guinea pigs in the Soviet Union's testing of nuclear weapons. Due to this every unborn child is tested for abnormalities. If there is even a chance that the child will be abnormal in any way they are destroyed without thought.
But that's a bit off topic. The Greek myths are full of stories of mortals being punished with disability. For example in the Myth of Chimeara and Bellerophon, Bellerophon believed that for slaying the Chimeara he deserved to reside on Olympus. So with the aid of Pegasus he tried to fly to the god's domain. Zeus however threw a thunderbolt past the flying horse spooking him and causing Bellerophon to fall. He landed in a thorn bush and lived out the rest of his days a blinded cripple. Another example is the story of Daphnis and the nymph Nomia. Daphnis fell in love with Nomia and promised to e faithful to her. When he broke this promise she blinded him.
This is a theme that Christianity continued. Disability was a seen as a punishment for past sins and could only be cured when the sins were atoned for. During the witch trials disability became a sign of witchcraft. Either the witch herself was disabled; she created disabilities in others or gave birth to disabled or deformed children. In fact if you read Hansel and Gretel, the witch is described as ugly, blind and uses crutches to move around.
In general nowadays however the emphasis seems to be on cure. The 'major' religions, for want of a better word, concentrate on healing and charity. The idea that anyone can be cured if they have faith. Personally I have always been sceptical of anyone who claims they can cure me, and I don't need charity. I never needed a cure; all I needed was a way to cope with my condition.
Which is how Persephone found me. By the time I collapsed on that walk when I was 14 I was already a self-initiated Wiccan. Although I had been raised going to church and attending Sunday school I knew by 12years old that Christianity wasn't for me. It just didn't make any sense. SO I read around a bit and finally landed on Wicca, although I couldn't get used to the names. Instead I saw the Greek deities. I had been reading Greek Mythology for a long time and was much more comfortable with those gods. SO I practiced my own form of Wicca with a Greek influence.
About 10 months after my collapse the doctors finally gave me a diagnosis. Myalgic Encephalomyelitis (ME), which I could never say and called magical eucalyptus, or more specifically Chronic Fatigue Syndrome (CFS) which luckily I could say. But it's not much of a diagnosis and they also told me that I wouldn't be able to take my standard grade exams. I had already missed an awful lot of school and my concentration was still very bad. I was so sensitive that I couldn't listen to music or watch TV unless the volume was very low and I couldn't read for very long. In fact the only way I could read for any length of time was to listen to the audio book while I read. SO I spent my days sitting on the sofa making dreamcatchers and doing cross stitch. But I'm incredibly stubborn so I decided that I wasn't going to let it beat me. I didn't want to spend my entire life sitting on the sofa.
Which is actually a little strange considering that I only finished writing this last night, sitting in my mum's living room. It's a different house now, but from where I sat all of yesterday typing in front of the TV, I could see the sofa I used to sit on.
Anyway, I decided that I was going to pass my standard grades and be back at school, at least part time for my highers. I was actually very lucky; my teachers visited me at home after hours and my mother and I tried all of the alternative therapies we could think of to manage my symptoms. The only one that worked was acupuncture, which I still get once a month.
Throughout everything this face kept appearing in my head. I had no idea who she was, but every time it was like she was saying "You can do this" and I did. I passed my standard grades, all 8 of them with 1's and 2's. I was back at school part time and then full time for my highers and advanced highers. And then I started reading mythology again. It wasn't until then that I realized who I had been seeing in my head. It was Persephone.
Since then my religious practices progressed over time. I adapted my rituals little by little and eventually abandoned Wicca completely for my own version of the Demeter and Persephone centered religion from Eleusis.
Now I still have limitations but I work around them. I know how to manage my energy and I know what my body is capable of. I don't handle loud noises well, or large crowds and I don't like bright lights. So I stay away from them as much as possible. I can't walk long distances or do any vigorous exercise, but I manage.
I strongly believe that when it comes to disability our focus, spiritually at least shouldn't be on finding a cure. Instead it should be on finding the strength to cope and adapt to whatever situation we are facing. Sometimes the gods throw obstacles into our path just so that we can prove to ourselves that we can overcome them.
I would be a very different person without my ME and it's been so long now that I can't really remember a time before it. In fact if someone offered me a magical cure all, a universally proven, no side effects cure; I'm not sure what I would do. The truth is I don't think I need a cure. I'm perfectly happy with who I am. I may not have wanted to label myself as disabled when I was first diagnosed, but it doesn't have as many negative connotations to me anymore. I am disabled and it's as much a part of my life and who I am as my religion and Queen Persephone.