Monthly Archives: September 2013

Happiness is a Selfish Book

My legs are a ridiculous size today. Quite massive. They are heavy, cumbersome and they turn the most simple tasks, like getting in and out of my wheelchair, into an advanced resistance training workout. I haven’t been able to get advice as to why I developed lymphedema about 4 years ago. Nobody really knows. I only know it’s a development I could do without.

I have ulcers on both feet. I’ll be lucky to get them healed before Christmas. That my legs and feet are twice the size they ought to be is not ideal for healing. Oh, woe is me!

As long as I don’t get an infection I’m not too worried. There is a solution, albeit a short-term one. I have to keep my legs raised to reduce the swelling. It seems to me to be a very good reason to put my feet up and lie back, either on my recliner or sun lounger, and read.

I have a complicated relationship with books. I am not a voracious reader. It’s not that I don’t want to read. I would like to spend the rest of my life reading and writing. I am in a position to do so. I enjoy it more than almost anything. Listening to music is its only competition. With all of the time I’ve had on my hands in the last 10 or so years I should be very well read and yet I read sporadically, at best.

So why is it such a struggle for me to get comfy with a good book? I had a counsellor try and tackle that question with me quite recently. When I told her that I was more likely to stare into space for disturbingly long periods than to pick up one of the many unread books on my shelves and that reading was what I wanted to do more than anything her response was:

‘What’s stopping you from being happy?’

That’s the last time I went. I can’t be doing with such clich├ęd enquiries. At any rate, I want to be happy and there is nothing stopping me. Ok, it’s not at the top of my list of priorities. It’s on the list though.

I actually do have a good grasp on why I find it such a struggle to read. When I was 13 I had spinal surgery that put me in hospital for many months as a result of secondary complications, namely a life threatening infection.

I went into hospital for spinal surgery when I was in my first year of high school. I was at my new school for, I think, about two weeks before I had to leave for Auckland Starship Hospital. It was a good two years before I was properly physically healed.

Less than a year later I was back in hospital for the removal of the titanium rods that had been wired to my spine to correct scoliosis and to keep my spinal fusion stable while it was healing. The infection was persistent. It was the only solution.

Before I went into hospital I was an avid reader. I loved books. By the age of 10 I was reading at an adult level. By the time I came out of hospital I could no longer concentrate on anything longer than a short story. Even that was a struggle. The trauma of everything I had gone through had such an effect on me that I could not read a page in a book without reading it again and again so that it would finally stay in my poor brain. I lost all interest in reading as a result.

I was going through my first existential crisis and I was still a kid. I was depressed and desperate. I didn’t understand what was going on. I wouldn’t make the connection back to the trauma I had suffered for many years after my physical scars had faded.

I’m 33 now and my ability to get through a book is still severely impeded by an inability to concentrate. I have my love of reading back though, which I am so grateful for. It’s a slow process and I’m not sure I’m ever going to be able to plough through books like I did in my carefree preteen days but I am finding authors now that are feeding my appetite for words.

Will Self was my gateway drug into properly good writing. Given my inability to concentrate, most of what I had read before I discovered Self couldn’t exactly be called literature.

He has piqued my interest in the English language and in playing with words for the sheer fun of it. He’s not everybody’s favourite brew but he has a delicious sense of humour and his writing has a very dark side, both appealing characteristics.

Peter Cook is my favourite comedian by a country mile so it makes sense that Will Self would be my favourite author. Their work isn’t similar in style but it shares an extraordinary talent for biting satire, often frighteningly accurate, and a penchant for the absurd. They both have a subversive sensibility, too.

These legs aren’t going to go down on their own. I’ve been meaning to read Will Self’s Umbrella all year, a book that was shortlisted for the Man Booker prize. It’s sitting on my shelf with only the first page digested. It intimidates me with all of its unread Man Booker prize shortlisted pages. I can’t wait for the day I finally pick it up and start reading it in earnest. Maybe I should start today. It’s going to take quite a while to get through. I still have to read every page at least twice. It would make me very happy to finish it, so I had better start it. After all, there is nothing stopping me from being happy.

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Help?

My local supermarket had self checkouts installed not long after I moved back to my home town. I would guess I was more excited than most about the idea. I love new gadgets and technology. I love that technology is making our lives easier every day. There was another reason for my excitement though: I could do everything myself. Supermarket shopping could now be done without assistance. Unless of course I needed something from a high shelf.

Interdependence might be the ideal but sometimes all I want is to be left alone and to do the things I can do for myself. I had got very used to being left alone in the city. I found I had to adjust again to losing my anonymity. People offer to help me all the time. That is both a blessing and a curse.

With self checkouts I so appreciate that I can now go into a supermarket, headphones blaring – Metallica, anybody? – and complete my shop without anybody bothering me. At some point though I will probably have some stealthy customer sidle up to me as I’m trying to decide which variety of beans I would like in my chicken casserole and ask:

‘Do you need any help?’

To which I always used to reply, ‘No’, bugger off implied. Charming, I know. My tone of voice reflected a frustration that I couldn’t do everything for myself and that I sometimes needed help. More than that though, I was angry that people assumed I needed help. Often I didn’t. Occasionally I would realise that the navy beans were on the highest shelf. Bridges burnt, casserole would evolve into curry. I’ve got over myself now. I’ve grown up a lot and mellowed a bit. Now I tend to say, ‘No, thanks’. Occasionally I’ll say, ‘Yes, please’. Hell, I sometimes even ask for help myself now if I need it.

What I couldn’t understand when the new self checkout system was installed was why the staff kept helping me: packing groceries, explaining the system, pressing the correct buttons, etc. As far as I was concerned I had made the considered decision to go through the self checkout lane precisely because I didn’t need or want any help. I often felt more patronised than if I’d just gone through one of the ordinary checkouts. Most of the staff knew me and over time had got used to helping me at the checkout only when I needed it and they would ask first.

Then one day, a few weeks after the new self checkouts were installed, I was taught a valuable lesson. A staff member who I’d found to be very patronising on the self checkout went through the normal routine of pressing most of the buttons for me, making sure my groceries were being packed properly, ensuring I put my card in the right slot and on and on until I found myself getting properly wound up. The worst of it though was that she addressed me as ‘love’ the whole time. It was all I could do to bite my tongue. I was beyond irritated. On this occasion I carried my groceries on my lap and stopped at the wall nearest to the checkout so that I was out of the way and could get the groceries onto the back of my wheelchair without interference. I was doing this when I heard:

‘Hi love. Here, let me help you. First you need to press this, and then you do that. Oh, I know, love…’ On it went, nearly word for word as if our exchange had been scripted and was being acted out again for the purposes of, goodness knows. Only this time one of the actors was different. The customer was able bodied. It dawned on me. I was being trained just as everyone else was. I was being treated the same as the other customers.

It had clearly been reasoned that there was no time to sort out who might need help and who would figure out the new machines easily. They were probably also trying to save people the embarrassment of not knowing what they were doing. I also realised that they needed to keep things moving. The place was busy.

I went home feeling like an idiot. I had done that to myself. My new interpretation of events was confirmed when I observed the same process every time I went back until, without saying a word, I was on my own and properly independent. The training wheels were off.

This experience and others have taught me a lot about myself. I now accept that, through conditioning, I have become too quick to judge people for wanting to help. I also accept that because of how I have been treated, I expect that people will pity me, judge me, patronise me, so I look for it. Don’t get me wrong, it is often there. If I’m out and about I still, too often, get treated terribly. A retail employee might ignore me and serve the person behind me with the assumption that they are my carer, or young adults will yell abuse at me, or someone will talk to me loudly and slowly in words of no more than two syllables.

Can I be blamed for being on the defensive when these interplays are normal and an uneventful interaction is an event? I often catch myself feeling grateful when I’m treated like ‘everyone else’.

It does still bother me, the assumption that I need help. I would much rather people took in the context of the situation and applied the same logic as one might for anybody else: Does the person look like they are struggling and in need of help? No? Move on, nothing to see here. Yes? Ask first. If they say no to help, accept that. If they are rude to you, that’s their problem. They might have had a lot of people offering unwanted assistance on that particular day. Life might be a bit rubbish for them at that moment. They could be venting at the frustration they feel every day that society still makes it difficult for us to live our lives in a world where the words ‘able’ and ‘normal’ are synonymous. They could also be yer garden variety asshole. Think of it as a Venn diagram: people with disabilities and assholes. We are not all victims or heroes. Some of us are bastards.

People with disabilities are more visible now than ever and I’m sure we will become even more so as barriers continue to come down. As diversity becomes the new normal, we are starting to realise we have more in common than we might think. One thing we all have in common is that sometimes we need help and sometimes we just want to be left alone. I’m just trying to get my shopping done like everyone else.


Help!

Independence has been hailed as the pinnacle of achievement for people with disabilities. The more you could do for yourself the more successfully you could integrate into society. If you could do everything for yourself, you might just be accepted as normal, or at least as not too disabled. You could assimilate. That was the promise, anyway.

That was the 80s and it was every man for himself – women too could give it a go if they were prepared to betray their femininity and their familial obligations. You don’t have to scratch the surface too hard to find that this attitude is still all too pervasive in our culture, but that’s another blog post. So, for people with disabilities, it was a case of having to deal with a multitude of barriers in a society that wasn’t the slightest bit interested in equality of opportunity and was very interested in how much money you could make, or at least in minimising how much you might take.

The message came through loud and clear: to need help was not only weak, you were a burden. It meant that you had not properly assimilated into what amounted to one of the cruelest paradoxes of 20th century politics: the society of individuals. If you could not exist on your own, society no longer had any use for you.

As a result of the Great Recession, governments are, once again, picking off their most vulnerable citizens and shining a light on those who are not performing. Society has once again become a large group of disparate individuals and those of us who need help are once again being made to feel like a burden. We are in the spotlight. We are being blamed for something many of us could have had no part in, even if we’d wanted to. Capitalism failed and we are being duly punished.

Is it any wonder I struggled to ask for help when I needed it?

I took some convincing to get home help. Eventually I accepted that it was not just necessary but a good thing. The person who convinced me put it this way: If you let someone else do the mundane jobs around the house, things that really don’t benefit you to do yourself, you might have the time and energy to do the things you want to do. You will be able to live your life. He didn’t use those exact words but that was the sentiment and it resonated with me instantly. I realised too that it was not my fault that I needed help and that it is not a weakness to ask for help. To ask for help is a strength. It shows strength of character. It illustrates that one is able to manage expectations and to embrace their own reality. It also shows maturity and an understanding that everyone needs help sometimes.

Interdependence is a word I am hearing a lot now. It has largely replaced the idea of independence in the discourse around disability. Disability politics has struggled for a long time to find a politically and academically sound discourse. There are a number of reasons for this, not least of which is the relative infancy of the movement and the diversity of its members, which accounts for its disparate ideas and the slow rate of change. There have been a great many words and concepts that have come and gone. Interdependence is, I hope, here to stay.

Interdependence is the idea that we should all depend not just on ourselves but on each other to get by. It embraces the notion that everyone needs help. It also promotes the idea that everybody has something to offer and that asking for help is not only acceptable but desirable and is an acknowledgment that one can give something back in return, not necessarily to the same person but certainly to others and to society. That’s society, the collective noun and not society, the Conservative notion of individuals who happen to be roughly in the same place at the same time.

It took me a long time to ask for help. Eventually I was nudged. It has changed my life in such a good way. I started out with more help than I needed – Oh, my! How times have changed – I have adjusted my time allocation to a compromise so that I still have to do quite a bit but essential tasks are done and I never go more than a few days without help. I have found a couple of people who do a great job and who I think understand my needs well. They give me my privacy and leave me with my dignity intact. Privacy and dignity are two concepts that one really learns to value and appreciate when living with disabilities. It is certainly possible to retain both. There just has to be mutual understanding and respect on both sides.

So, I have embraced the idea of interdependence with regard to help in a formal sense, where that help is funded. What though of help from those who are not paid to do so? Reads to me like a reasonable topic for my next blog post.

As always, thanks for reading. Please leave a comment or share your own experiences below.


The Body Beautiful

Over the past few nights I’ve been indulging in a bit of televisual entertainment. I don’t watch a lot of television anymore. I have, like many others in the age of broadband, replaced one screen for another. If I’m not staring at my microwave waiting for last night’s dinner (version 2.0), I’m watching something, probably comedy or a documentary, on my computer screen.

Strangely the last couple of animated comedies I’ve seen, episodes of Futurama and American Dad, have had a big impact on me. They have got me thinking. I’ve also been left feeling very disturbed.

Futurama is a programme I have liked a lot over the years. I think the writing is really smart and often takes you to places you wouldn’t expect from the genre. The story lines aren’t afraid to really examine the human condition and while it is a comedy, it has left me in tears on more than one occasion. It can be oddly moving.

I used to like American Dad a lot when it came out. The characters are all very funny and some of the jokes were well executed. I don’t know if it’s me or the show but I’m just not interested in it anymore. Like a lot of Seth Macfarlane’s comedy vehicles, I find I don’t see the point in a lot of it as comedy. It no longer makes me laugh. It tends to see a line and cross it for the sake of it and to me that’s often at the expense of the comedy. Obviously, this is just an opinion. Tastes change and mine are clearly going through an evolution.

This week both Futurama and American Dad aired episodes here in New Zealand. Let’s start with Futurama. The plot line I’m interested in exploring went something like this: Hermes, a Jamaican man and one of a handful of human characters on the show, is feeling wholly inadequate. He feels that he’s not being a good enough husband and father. He sees himself as weak and insignificant. Poor old Hermes can’t even get the respect he so clearly deserves at work. Fed up, an inability to complete a task that Bender is able to do all too easily is the final straw. He seeks the services of a back ally surgeon who installs an upgrade that amounts to a retractable harpoon that springs forth from his abdomen. He becomes obsessed with becoming a better Hermes through robotic upgrades until the only thing that is left of the original Hermes is his brain, which he decides also must go. His friend Dr. Zoidberg has, unbeknownst to Hermes, been constructing a meat puppet from his discarded body parts, which he uses in a macabre ventriloquist show and so, when his brain is discarded in a final act of self hate and self destruction, Zoidberg is able to bring his old friend back in his original human form.

In the episode of American Dad, Stan’s wife, Francine, buys a dog for his son, Steve. Stan had put his foot down. He did not want another dog in the house ever again. We find out the reason is he was made to kill his own dog as a boy because he was told his dog was dying. In reality, his parents needed the dog gone because they were moving the family into an apartment that didn’t take dogs. When an adorable puppy shows up, Stan resists for about two seconds and then instantly bonds with the puppy. When he inadvertently is responsible for the near death of this second dog, called Kisses, he can’t handle the trauma of having to have him put down and so ends up keeping Kisses on life support until he finds a healer who, in the style of Dr. Frankenstein, brings the puppy back to life. I won’t go into the image that I was faced with having to process but it was too much for me. I’m sure you can find it for yourself if you really can’t live without seeing it. Eventually, Stan finds closure and puts the puppy out of its misery, by blowing it up. Animal cruelty isn’t funny and I didn’t crack a smile once during this episode. That said, along with the episode of Futurama that I described, it did make me think, which nearly justifies it.

Two days ago I saw a wound specialist for advice. The woman I saw is not a doctor. She is a nurse who is such a specialist in her field that she knows more about the treatment of wounds than most of the doctors I’ve seen.

The wounds are on my feet. Both of them. These wounds are relatively new but might as well be the same as ones I had a year ago or two years ago. I’m getting a real sense of Groundhog Day.

The nurse, who I’ve seen before, brought up again the possibility of amputation; the removal and discarding of my legs and feet. A grizzly business. If everything goes to plan though, I could get a big chunk of my life back that I thought I’d lost forever to swelling, bad circulation, doctors, hospitals, infections and wounds and infected wounds. It would by no means sort out all of my health problems but it would likely help enough to increase my quality of life, so I am considering it.

Over the last few years, I have seen a few different orthopaedic surgeons about my back as well. I have either broken my spine or a spinal fusion that I had, aged 13, might not have properly taken, probably due to a life threatening post-op infection that I suffered at the time. My spine has collapsed further with scoliosis becoming so advanced that specialist surgeons can’t really tell what they are looking at, whether the image be X-ray, CT scan, or MRI. I am waiting now for yet another referral to yet another surgeon.

The reason I found the episodes of Futurama and American Dad so disturbing is that we have got to a point in medical science where ethics are struggling to keep up with advances in medicine. This has clear implications for both humans and animals. A side effect of this is that patients or next-of-kin if the patient is too incapacitated to make decisions themselves, are being asked to make decisions that they would never have had to consider before these advances.

That I am alive at all is down to relatively recent advances in neurosurgery and the discovery of penicillin. That I have any quality of life at all is thanks to orthopaedic surgeries. I have lost count of the number I’ve had. Parts of me, particularly my back, look like a very badly constructed patchwork quilt.

All of these specialist appointments, the indecision, the increased anxiety, past trauma relived through jogged memories; it’s all doing my head in. When do I say enough is enough?

Specialists can’t tell me with anything approaching certainty that further surgery will definitely improve my quality of life. From a purely physical perspective my health is declining and so is my quality of life. There are aspects of being here, in this body, on this blue planet, that right now make up for having an increasingly malfunctioning body. I worry that this may not always be the case. I fret that decisions I make now might not be the right ones. For better or worse, they are my decisions to make.


Atheism and Disability

I was handed money for being disabled a few times when I was a small child. It was always a surreal experience. You would think that for a child any money is good money. I instinctively knew that this was money from people who felt sorry for me, who wanted to ease my burden. That they almost always followed it with a saccharin smile and the words: ‘May God be with you’, gave me a very uneasy feeling. It cemented a connection between religion and personal charity that was misguided at best and incredibly patronising at worst. What these people didn’t know is that I love my life and my disability has never got in the way of a good life.

Please don’t get me wrong, the idea of giving is a wonderful one. It can change lives. The thing is, I didn’t need money as a child. My parents weren’t wealthy then but nor did I want for anything. My father has worked very hard all of his life to provide everything we need. One of my favourite memories as a child is of him carrying me inside from the van when he thought I was asleep. I peeked out through one eye to view the most beautiful starry sky. I also remember him holding me in the sea and alerting me to a group of small fish in front of us that were dancing on the surface of the water. One of my first words was pen. I used to grab at the pen in my Dad’s front pocket when he held me.

My Mum was so much fun growing up. We would laugh together all the time, which was to become invaluable during periods of my life that were frankly horrendous due to painful surgeries and medical complications. I can’t begin to describe the love and support she gave me during those times. My Mum is also the best cook in the whole world. This is an indisputable fact.

Both parents provided us with a good moral compass and a stable home environment in which to grow and flourish.

I also have three younger sisters, all of whom I have always got on with very well and who were and are the best company. They are seriously awesome people.

Ours was a happy, stable and fun household. I was a happy and well adjusted kid. Given all of this, I found it shocking that anybody would feel sorry for me and worse, that they would feel the need to give me money to try to compensate for my terrible life. It simply made no sense.

Since my childhood in the 80s and 90s, there has been a huge leap in knowledge and understanding of disability in the wider community and I have certainly noticed a difference. There is still the propensity for people to feel very sorry for me, but I haven’t been handed money for being disabled for many years. Pity. I could use it now!

There are still the street preachers who tell me that I can be healed if only I believe in Jesus as my personal saviour and who shout after me when I keep wheeling that if I believe hard enough, I can be saved. The idea that I’m not doing enough to please god yet in order to be ‘healed’ just solidifies the idea in my mind that if god does exist, he’s a bit of a bastard.

Far from needing ‘God’, as many people might assume would be the case for a person ‘like me’, I consider myself to be very fortunate. This though is, ironically, due to a combination of accident of birth, ridiculously wonderful family and friends and a lifelong curiosity about the world. I’ve also worked hard to come to a place of understanding and acceptance. I did that myself without the need to tell stories to explain away things that I don’t like.

I have heard many theories based on religion and/or spirituality as to why I was born with Spina Bifida. People like to be able to explain how and why bad things happen in a way that satisfies them and is compatible with their own belief system. Some of the explanations have ranged from the bizarre to the ridiculous through to the downright offensive. I won’t go through them all here. I’m sure you can probably imagine. That I’ve been put on the Earth to teach people various things about life seems to be a common one. Karma for bad actions in a past life is another. That I don’t believe any of these ‘theories’ should come as no surprise to you now.

I was born with Spina Bifida and hydrocephalus probably because of a lack of folic acid. It wasn’t well known or publicised around the time before I was born that taking a simple vitamin supplement can reduce the chances of having a baby with Spina Bifida by a really significant margin. There are other factors that may lead to neural tube defects like Spina Bifida such as genetic predisposition and harmful chemicals in the environment during the development of the foetus. These are scientifically proven facts. Anything else is a story used in order to comfort people and to shield them from reality. This concept is anathema to me. None of these stories have ever made any sense to me at all nor have they been of any comfort.

Rational thought is comforting to me. Science makes sense. I look forward to the day when we are grown up enough to let stories be stories and for the pursuit of truth to stand on its own as our greatest comfort in a vast and expanding universe.


Going Without God

I have been an agnostic for most of my life. Around the time I was told Santa Clause and the Tooth Fairy are not real, except in my head, I began to think God might not be real, except in my head. As far as I can remember, I did not find this thought nearly as disturbing or mind altering as finding out about Santa.

I became an agnostic atheist proper following a mental health episode, which has never been properly defined for me but I can say it was the most terrifying moment of my life. I say moment; nearly two years would be accurate enough.

10 years ago I was writing a thesis for an MA, or at least I was meant to be. Several factors conspired against me to create the perfect conditions for a mental breakdown of sorts that would put an end to my academic ambitions. I found myself extremely isolated, lonely and stressed. I wasn’t coping with the basics of looking after myself. Because I didn’t receive any treatment for my condition, I cannot define what was going on in my head in any more precise terms.

It began during my honours year. I was studying toward an honours degree in history with papers in women’s studies. There was a lot of work and it was challenging but I loved it. The space to think was wonderful. Reading and analysing challenging texts made me feel properly engaged in academic life. I didn’t even mind the assessments. Despite a decidedly average undergraduate degree, I found myself at or near the top of all of my classes in my honours papers. I graduated with a first class pass, something I’m still very proud of. Unknown to everyone around me, something was making it extremely difficult to retain my good grades. I was beginning to experience my first breaks with reality and most of them were religious in nature; more precisely, Christian.

By the following year, I was having thoughts that made absolutely no logical sense and yet I was convinced that my life would be changed forever because my thinking about the world was clear for the first time. I understood the meaning of life. I understood everything. The problem was I couldn’t explain my epiphanies to anybody: 1. Because I was lucid enough to know I would be thought mad. 2. Even though everything seemed clear to me for the first time and that the truth had been revealed to me, the truth was my thoughts were in such a tangled mess I couldn’t begin to express a single one.

By the end of 2004, I had escaped my ordeal with a fragile grip on reality beginning to take hold again but without an MA. I hadn’t written one word. I had thrown away most of my academic texts thinking they were evil. My thesis topic, which happily coincided with 30 years of Gay Liberation, was to be a history of that movement in New Zealand. My books were evil, my topic was evil, I was evil.

Once I started to trust myself and my thought processes again, one of the first things that happened for me was I became an atheist. Not only could I not be sure God existed, I didn’t believe he existed either; knowledge and belief being the distinction between agnosticism and atheism.

Once I began to recover, my religious delusions seemed ridiculous, implausible and unhealthy. As time has gone on, I have become more interested in atheism and its connection to humanism. As well as an atheist, I consider myself a secular humanist. Carl Sagan is a personal hero. I believe in ethics and morality based on knowledge and reason and an understanding of human nature; I believe in logic and the scientific method as our best tools against the tyranny of ignorance; I believe learning about the world we all share is the best way to combat ignorance. I have become more interested in the contributions of human beings to the shaping of our world. I have much more of an interest in how the world works and what we actually know of how it came to be. The world is a far less scary and more interesting place without god.

Am I saying that being religious is akin to mental illness? Not really. There are many perfectly sane and intelligent individuals to whom religion is extremely important. Had I attached myself to a religious movement at the height of my crisis though, there is no doubt in my mind that my mental breakdown would have been interpreted as religious epiphany and celebrated as such. I’m not at all convinced by the distinction made between religion and mass psychosis.

In my next blog post I will discuss disability and atheism.

Please let me know what you think of this blog post and feel free to share your personal experiences regarding this topic in the comments below.