Disconnection, tragedy, shame and other fun things...
I’m feeling a bit disconnected tonight. I have several emails/comments that I want to reply to - but am feeling too... odd to really manage to write them - but will, eventually (can’t even force myself to write souless work emails...). So I thought, in lieu of connection with other people individually at the moment, and because I do want to connect, but... can’t - that I’d post a couple of things people may find interesting.
The following is a short piece that I’d written back in 2000/01 as part of a creative writing unit at university. Had shown it to piyarna and she thought was worth posting. It was one of the first pieces about disability that I had written as an adult. I would perhaps write it differently now, but I still agree with my original premise.
THE TRAGIC BODY
I am sick to death of my disability being thought of as a major tragedy in my life and the lives of those around me. The real tragedy is society’s reaction to disability. Because it not only has a lasting and damaging effect on people with disabilities, but because it also has a lasting and damaging effect on society itself.
People with disabilities are the only severely discriminated against and oppressed group that anyone in the world, no matter what their age, sex, race or income level, can be dropped into at any point and time without warning. So however the able-bodied community react to and treat us will inevitably rebound on them.
Living with a disability can be many things to those of us who are directly affected by it. It can be, and often is; painful, frustrating, annoying, exhausting, frightening, irritating, time consuming, costly, isolating, permanent and much more. But one thing we almost never find it to be is tragic.
Those of us with disabilities rarely refer to our disability or ourselves as tragic. Tragedy is a label foisted upon us by people who have no idea of what our lives are really like, and who don’t particularly want to know. They think our lives are so dreadful and we must all wish ourselves dead, because they do not want to deal with our reality and existence, and wish us dead to save themselves the trouble. And we cannot defend ourselves or explain ourselves because tragedies aren’t supposed to make any noise or argue; they must be silent, blank, still and ideally, dead.
I believe that the real tragedy for people with disabilities is society’s inability to cope with them [1]. It is the neglect and abuse of us. It is the systematic denial of our needs, wants and desires. The denial of the fact that we are not solely and totally our disabilities, that we might have souls and spirits and hearts and dreams, and passions and loves and hates, also. The denial of what we can give to others both because of and regardless of our disabilities. Their denial of our capacity for love and support, our ability to help and care for those around us in as many different ways as are open to able-bodied people.
Ultimately, society tries to, and tragically too often succeeds in denying our humanity, our right to live full lives, our very existence.
[1. yikes - I would, now 5 years later, use the word ‘us’ here - but at that time I was still struggling with a lifetime of internalised oppression]
***
piyarna also reminded me of a series of articles that I’d read a few years back.
http://www.raggededgemagazine.com/life/shamespeaks1.html
Shame is something that is on my mind often, it’s something that is part of everyone’s life, but is often denied and hidden. I have a lot to say about it - but it’s very nature means that it is hard to put into words. These articles do a brilliant job and are well worth reading.
Speaking of reading, I’m re-reading ‘Skallagrigg’ by William Horwood. This is one of my ‘desert island’ books. First read it at age fifteen and it was the first novel I’d ever read that had characters with disabilities who were actually written as human beings with the full range of emotions and personalities - no ‘disability used as metaphor’ here. People who I could identify and connect with. It was also the first novel I’d read where the main character was a girl with CP, like me. The first book about people with disabilities that I’d ever read where they didn’t ‘overcome’ their disabilities or get ‘cured’. A complete antithesis to books like ‘The Secret Garden’ - which I still love, despite it’s annoying, cloying and patronising attitude towards disability. I always identified more with Mary than Colin, and was entranced by the main character in ‘Skallagrigg’ feeling the same way. I’m not going to describe the plot here, just can’t - but read it, it’s first and foremost a great story about love and family and friendship. It’s really an old fashioned ‘quest’ saga. It had a profound effect on me as a teenager and I re-read the book every couple of years and get something different out of it every time, depending on what is going on in my life at the time.
The following is a short piece that I’d written back in 2000/01 as part of a creative writing unit at university. Had shown it to piyarna and she thought was worth posting. It was one of the first pieces about disability that I had written as an adult. I would perhaps write it differently now, but I still agree with my original premise.
THE TRAGIC BODY
I am sick to death of my disability being thought of as a major tragedy in my life and the lives of those around me. The real tragedy is society’s reaction to disability. Because it not only has a lasting and damaging effect on people with disabilities, but because it also has a lasting and damaging effect on society itself.
People with disabilities are the only severely discriminated against and oppressed group that anyone in the world, no matter what their age, sex, race or income level, can be dropped into at any point and time without warning. So however the able-bodied community react to and treat us will inevitably rebound on them.
Living with a disability can be many things to those of us who are directly affected by it. It can be, and often is; painful, frustrating, annoying, exhausting, frightening, irritating, time consuming, costly, isolating, permanent and much more. But one thing we almost never find it to be is tragic.
Those of us with disabilities rarely refer to our disability or ourselves as tragic. Tragedy is a label foisted upon us by people who have no idea of what our lives are really like, and who don’t particularly want to know. They think our lives are so dreadful and we must all wish ourselves dead, because they do not want to deal with our reality and existence, and wish us dead to save themselves the trouble. And we cannot defend ourselves or explain ourselves because tragedies aren’t supposed to make any noise or argue; they must be silent, blank, still and ideally, dead.
I believe that the real tragedy for people with disabilities is society’s inability to cope with them [1]. It is the neglect and abuse of us. It is the systematic denial of our needs, wants and desires. The denial of the fact that we are not solely and totally our disabilities, that we might have souls and spirits and hearts and dreams, and passions and loves and hates, also. The denial of what we can give to others both because of and regardless of our disabilities. Their denial of our capacity for love and support, our ability to help and care for those around us in as many different ways as are open to able-bodied people.
Ultimately, society tries to, and tragically too often succeeds in denying our humanity, our right to live full lives, our very existence.
[1. yikes - I would, now 5 years later, use the word ‘us’ here - but at that time I was still struggling with a lifetime of internalised oppression]
***
piyarna also reminded me of a series of articles that I’d read a few years back.
http://www.raggededgemagazine.com/life/shamespeaks1.html
Shame is something that is on my mind often, it’s something that is part of everyone’s life, but is often denied and hidden. I have a lot to say about it - but it’s very nature means that it is hard to put into words. These articles do a brilliant job and are well worth reading.
Speaking of reading, I’m re-reading ‘Skallagrigg’ by William Horwood. This is one of my ‘desert island’ books. First read it at age fifteen and it was the first novel I’d ever read that had characters with disabilities who were actually written as human beings with the full range of emotions and personalities - no ‘disability used as metaphor’ here. People who I could identify and connect with. It was also the first novel I’d read where the main character was a girl with CP, like me. The first book about people with disabilities that I’d ever read where they didn’t ‘overcome’ their disabilities or get ‘cured’. A complete antithesis to books like ‘The Secret Garden’ - which I still love, despite it’s annoying, cloying and patronising attitude towards disability. I always identified more with Mary than Colin, and was entranced by the main character in ‘Skallagrigg’ feeling the same way. I’m not going to describe the plot here, just can’t - but read it, it’s first and foremost a great story about love and family and friendship. It’s really an old fashioned ‘quest’ saga. It had a profound effect on me as a teenager and I re-read the book every couple of years and get something different out of it every time, depending on what is going on in my life at the time.