Friday, May 1, 2009

Blogging Against Disablism Day

I've been very bad in not updating this blog, and a lot of feminist issues have shat me off lately, but I tend to feel like I'm not clever enough to blog about them. I've never been to university and I haven't read much in the way of feminist literature. I just read a lot of other blogs by people who DO read that stuff and learn from life and what I come across.

Anyway, point of this post. Blog Against Disablism Day! Very, very important. I have two stories to tell.

First is about my nephew Johnny. Johnny opened my eyes and introduced me to disability. My sister had him when I was seven years old. I remember the day he was induced - I was so excited. I'd never been an auntie before, and I was so looking forward to having a new friend to play with.

Something went wrong with Johnny's delivery. Due to being induced too early (the Doctor was a proper douchebag) the cord wrapped around Johnny's neck and he went without oxygen for a very long time. As a result, he was on life-support and had to go into one of those incubator crib things. I forget the word presently for it presently, it's 3:21am and my brain has mostly shut down.

In the early months it was clear Johnny wasn't right. After several visits to the doctor and a few tests, he was diagnosed with severe cerebral palsy. I remember the day my sister found out. It was like someone had died. In a way, someone had. The lively, running, jumping, talking boy that would grow into a tall, strong man - he was gone. Instead was left a boy that would forever need the help of others to survive, whose body would not be strapping and straight. We grieved that he would not enjoy the freedom of such a thing. There was no harm in feeling sad for him.

Johnny has taught me so much. In all the years he's grown and still found ways to communicate with us. His sense of humour - what a sense of humour! He'd squeal with glee when my brother and sister and I would dance and sing for him. Bringing out a guitar and playing a song for him is just the best thing in the world. The thing that always warmed my heart with immeasurable love and admiration was that Johnny, despite all the difficulties his disability brings him, still has a smile for us. Even if it's just his eyes lighting up at you.

He's surrounded by loving family. His mother is one of seven (I'm the fifth) and countless grandchildren. His parents look after him night and day, because they can't trust anyone else to. The government just doesn't have the trained staff to help them, because they pour their money into shit they think is more important, like housing developments for the rich or the mining industry. Health and education atrophy, and it's always people like Johnny who suffer.

Johnny was staying for a trial week at a new respite centre (to give his Mum and Dad a break every few days and catch up on their sleep). In one night he got congested, coughed up, vomited, inhaled his own vomit, then contracted a lung infection from that vomit. The doctors told us that it would be a matter of hours until Johnny died from eventual asphyxiation.

My sister, her husband and a physiotherapist stayed up all night, massaging John's back and suctioning him (the spit and mucus out of his mouth and throat). They never gave up. And Johnny lived to tell the tale, shocking the doctors.

This year, he celebrated his 21st birthday. The doctors that saw him as an infant didn't think he would live this long.

I've suffered from depression since my late teens, and recently have had anxiety added to that due to sexual assault. Johnny never ceases to both amaze me and inspire me. He's the closest thing to an angel that I've ever met.

Governments need to step the hell up and start supporting their carers. Carers are the unsung heroes of the world. My sister's husband stays at home with Johnny instead of working, and yet the government refuse to pay him because my sister has a job. Carers should be paid, regardless of whether their spouse makes any money. They should be paid because they are doing a job the government would have to do if it wasn't fulfilled by the parent. For all they go through, they bloody well deserve a few hundred bucks a fortnight *at least*. What the hell is wrong with the world when a government is so uncaring, that it lets such selfless, amazing people suffer?

Next time you vote, think about the disabled. Ask your local representatives about their plans for the disabled and their carers. The more of a fuss people make, the more attention politicians will pay to it. Supposedly. I saw my sister tearfully dress down a panel of ministers here in Perth, Australia, because they were placating and bullshitting and NOT listening. It was fierce and angry and damning. And you can bet they forgot about what she said soon afterwards. (I'm talking to you, Giz Watson!)

Disability isn't always visible. You look at my nephew, it's pretty clear he's disabled - stunted growth due to lack of muscle use, etc. There's another kind of disability that is routinely discriminated against, and is greatly misunderstood by people. This one is less of a problem because it can be changed by a little bit of education - that's all it takes. Opening of minds and a bit of compassion.

Chronic illnesses are something a lot of people struggle with every day. I can't speak for other people, but I can share my own view of being someone with a chronic condition.

In 2005 I was diagnosed with endometriosis. All my adult life, I had struggled with excruciatingly painful periods. Everyone told me that it was normal, that women had pain and that this was something I had to suck up and live with. Alarm bell one was missed! All due to some fucked up thinking in both society and the health profession that painful periods were something women just had to put up with, and that I was probably making a fuss over nothing. Cause that's what women do, isn't it?

Years of severe periods and associated symptoms of hormone fluctations went unnoticed. It wasn't until I was feeling routinely nauseous in the mornings and my persistent 'bladder infections' that I'd always had on and off turned out not to be a bladder infection at all. Where-as other doctors had thrown antibiotics at me, this doctor stopped and said, "Let's get you tested."

My first gynaecologist immediately put me on birth control pills. They were an unmitigated disaster. With my depression, they made me feel like a Leonard Cohen song sounds. I stopped taking them, and then she was angry with me. I demanded to see someone at a specialist hospital for women. It took months for me to see them, due to my being on the public health system (I was a poor unemployed artist). I finally, after months, got to see a gynaecologist. He promptly told me that he didn't think I had endometrios, that it was probably gastrointestinal. This was after seeing a few doctors (a gastroenterologist who said it was NOT gastrointestinal, gynaecologist number one who confirmed it was endo in their opinion, my regular doctor, a second opinion doctor) who said it WAS probably endo. I was in tears as this man arrogantly dismissed my symptoms as I described them to him.

He deigned to give me a laparoscopy. He didn't even plan for the contingency of burning any possible growths out. Usually, if they bother going in, they make sure that if they see anything, they burn it out. I had to have TWO procedures in ONE YEAR due to this fuckwad's gross incompetence.

I remember recovering from that first lap, blown to the four winds on pethidine and whatever else they pumped into my arm when I was under, the gynae coming up to me and my mother and telling me that I had endometriosis.

First thing I did was point at the gynae and shout "HAH! TOLD YOU!"

The second thing I did was sob in mingled relief and grief.

I felt like my life was falling apart. In the months that followed, I had to come to terms with the fact that I was going to have to live with being in pain. All the time. Before I had endo, (or before it got bad), I used to walk everywhere. I don't have a car, and I preferred to walk and take public transport everywhere. I'd walk to the pub, I'd walk to the shops, I'd walk to friends houses. I'd go for walks on sunny days just for the hell of it. I'd go to the beach and run into the waves. I'd swim for hours at the pool on hot sizzling summer days. My skin was lightly tan and my cheeks had a healthy blush to them.

These days, I have dark circles under my eyes from the nights I miss out on sleep due to the pain. My skin is pale, due to being inside so much and not being out on long walks. I miss walking so much. I miss having the freedom to go to the shops if I needed something. I didn't have to ask anyone for a lift anywhere.

I had to pull out of music school. I was finally pursuing my dream - getting into the music industry, getting into a band, learning all the tricks. My music career, in the traditional sense, was over. (I have a youtube account that I still perform my songs on).

I grieved, I yelled at God with confusion mingled with rage. What did I do to deserve this? Why was God raining shit down upon my head so heavily? (At that time I also had broken up with a boyfriend and my sister was getting married, so I felt like a huge fucking failure).

I don't know if people know what it is to lose mobility. I struggled with the government, as I wanted to try to find work, but at the same time, I couldn't work cause I didn't know if the next treatment would work or not. I got a second laparoscopy, the endo was cut out. I didn't get hormone treatment straight away due to waiting periods for appointments, and in six months the endo grew back and I was back at square one.

This year, after months of meetings, appointments, explaining to some fucking official for the hundredth time that YES, I don't look like I'm disabled or have low mobility, but I in fact DO, and NO, endometriosis is NOT curable, don't look at me like that, I finally got on the government's Disability Pension.

It's been a relief. But it's also been a sad thing to accept - I have a disability. I don't look disabled, in fact I look like the very figure of athleticism. Wide shoulders, long slim legs, sturdy, vaguely hourglass frame. But inside this body, there are growths that are making my organs stick together and from the moment I wake up to the moment I go to sleep, every day, there is pain. Always pain. It's just a matter of whether I can distract myself from it or not. And don't even get me started on the pain killer merry-go-round.

So I want to take this opportunity to educate and raise awareness about endometriosis. Girl's problems are generally dismissed and aren't taken seriously. It's women's plumbing - isn't pain a part of the script? No, it's not. Not in a perfectly healthy human being. It's time people realise this and start treating women with respect and dignity, and not as hysterical, weak beings with no sense of proportion or urgency.

If you read this far, have a cookie. Aw heck, have a few. And don't worry if it makes your backside a bit bigger. As long as your legs work and you're healthy and hale, it doesn't matter. Trust me on this one.

1 comment:

  1. Great entry. I wish I could have a cookie, but they're on my desk and I've just settled on my couch because my hips were not agreeing with my feet not being up... O well, I had a few before.

    Your neffew seems to be an amazing man. And I'm sorry about your endo. It seems to be a terrible pain. People need to realize that the fact that we look healthy doesn't mean we are.