Thanks to the wonderful Australian Atheist Foundation, my article has been picked up by The Age newspaper. I wrote about how my Muscular Dystrophy changed my perspective on life, religion and responsibility.
It’s hard to disagree with someone you’ve always admired and respected as an intellectual and advocate for causes close to your heart. I experienced significant cognitive dissonance whilst reading the wonderful Stella Young’s article on voluntary euthanasia ‘Disability – a fate worse than death?’ (http://www.abc.net.au/rampup/articles/2013/10/18/3872088.htm). My primitive brain couldn’t wrap itself around the surprise that came with reading about Stella’s opposition to legalising assisted death in any form. Don’t get me wrong, it’s a great article with some points that did make me question my stance, but my vehement support for voluntary euthanasia held on.
I believe in humans being able to make their own decisions, as long as these decisions don’t harm others. Take drugs, get fat, get tattoos, have an abortion, swear, refuse medical treatment, or dance naked, I don’t care, just don’t hurt others if you decide to do so. I do acknowledge that some of these actions could indirectly hurt others, such as family and friends suffering with a loved one’s drug addiction, but I do believe that’s their choice. As someone with a lifelong debilitating disability (muscular dystrophy), choice is one of the most important things in life for me. I’ve been stripped of many choices in life; I didn’t choose to be in a wheelchair, I didn’t choose to have others help me with everyday activities, and I didn’t choose to suffer from the mental illnesses that come from this loss of choice. I didn’t choose this life; I was just an unfortunate participant in the genetic lottery. Don’t get me wrong, I have a fantastic life. I have loving friends and family, I’ve had a great education, and I’m a generally happy and content person.
I just want the choice to control my own life and more importantly, my own death.
Stella stresses the misconceptions that the general public have about people with disabilities and their apparent quality of life. She’s right; most people assume that a disabled life would be unbearable. There’s a prejudice, but unfortunately this prejudice is sometimes accurate. Some disabled people’s lives are shit. There’s no sugar coating it. There’s no amount of therapy, help or positivity that can change some people’s circumstances. If this is truly the case for some people, why not give them the CHOICE to end their lives with dignity? There are some things worth than death, and being in great pain, discomfort and misery are some of them.
Of course this doesn’t mean that everyone with a disability should kick the bucket. That’s the beauty of voluntary euthanasia, it’s voluntary. This is why I can’t see how someone could be opposed to it. It is a personal choice that an individual will make, having considered all the options, and being deemed mentally fit to do so. The rules will need to be incredibly strict to avoid what Stella discusses in terms of discrimination and ill treatment from medical professionals, I agree with her wholeheartedly with that.
I think assisted suicide is the next step in bettering our society. Death is an important part of life. We need to remove the taboo and fear around it. I believe that everyone, regardless of disability, should be able to choose when and how they die. I definitely want to be able to control my own passing. My particular type of MD deteriorates my muscles over time, rendering them weak and essentially useless. There is no set diagnosis for me. I don’t know what my condition with be like in 6 months, a year, or a decade. When it gets to the point where I feel excessively debilitated and I have no quality of life, I’d like to be able to choose to die comfortably. I will inform my family and friends that it’s my choice and that yes, it will be upsetting, but continuing living would be even more upsetting for me.
I know it seems morbid for a young woman to be planning her own death, but I’m not scared of death. Without getting too philosophical or deep, I don’t see death as the end. I’m not religious at all, but I take comfort in the fact that the atoms that made up who I am will then be redistributed into the universe, from where they came. I’ve always been open about my desire for an assisted death when the time comes. My family is well aware of my wishes and accept my reasons. They love me enough to support my choice.
That’s what it is; a choice. A choice we need to offer those who want it.
This isn’t a pity post. If I wanted pity I could just jump in my wheelchair, go and sit at a cafe and look sad. I get enough pity in my life.
This is a post about being sick for an extended period of time. Most colds or flus last about a week or so. I’ve been unable to leave the house except for doctor’s appointments for about 4 weeks now. I have a mystery virus that is making me weak as fuck, nauseous, in pain, tired, lethargic and I’ve lost my appetite (noooo!). Because of my MD, it’s hitting me hard. My already weak body is being battered by whatever this crapballs illness is. I’ve had to turn down invites to outings, and I’ve had to blow off my boyfriend visiting 2 weeks in a row. It’s getting ridiculous.
But that’s not the point of this post.
I thought as a cripple, I was pretty limited in my mobility and life choices. I use a wheelchair, and as you can imagine, they’re not exactly suited for fun activities like going to the beach, or road trips or sky diving. Yes, that escalated quickly. I’ve always just sighed and said ‘oh well, that’s life’, maybe had an angry cry if I really felt I was missing out, but then I’d move on. However, now that I’ve been basically bed bound for a month, unable to even concentrate on my thesis or work that I CAN do from bed/home, I’m appreciating my past freedom even more. Sure, it was restricted, but it was my reality. I don’t know any different. But now that I do know different, this different is shit, and I want to go back to being a somewhat restricted cripple.
I’m not a ‘silver linings’ type of person, but if I had to extract one from being too sick to move, it would be that life isn’t that bad in my restricted cripple state.
(Thanks for reading, I know it’s not a particularly interesting post, but I’m going bloody insane and needed to word vomit my thoughts out. Isn’t that what blogs are for?)
Like many people in their early 20’s, I spent my Saturday night watching a documentary on stem cells. It followed three people with different health afflictions (ranging from a paraplegic spinal injury to heart disease) as they visited different universities around the world to see the progress they were making with stem cell research. Before I continue, let me just say ‘F*CK YEAH SCIENCE’, because I was amazed. There were beating hearts made from scratch, bone replacements, and a finger being grown back. The scientists were passionate about dedicating their lives and research to help others. I didn’t detect any hint of them doing it for fame or notoriety (it just might be a nice added bonus for them). The faces of the three people in the documentary lit up when they were told that science was on the brink of amazing regenerative stem cell therapies, and I have to admit, I felt a little flutter of the heart. This surprised me, as I usually don’t pay much attention to ‘Stem cell cures in 10 years!’ articles or stories. I don’t cling to hope of a cure for my Muscular Dystrophy as I fear I will only be bitterly disappointed. I’m not saying a cure or treatment will never be discovered, but I prefer to live my life in the here and now, not wish it away with false hopes.
This flutter of the heart then exploded into hours of fantasies about a cure, the treatment, and what my life would be like. I never let myself think about these possibilities as they often lead to melancholy when I come back to reality, but this time I just let go and let it happen. Here’s an insight into my mind holiday:
Even if the treatment is discovered and available in 15 years, I’ll only be in my mid 30’s. I’ll have a whole life ahead of me. After all the necessary rehabilitation and settling into my new life I would start the day getting out of bed by myself, my feet touching the carpet without pain and strain. I would leisurely WALK to the kitchen to make myself a coffee, lifting the kettle myself. Then I might WALK over to the couch, which would be an amazingly comfortable alternative to my usual wheelchair. After that, I’d get dressed without help, complete my bathroom routine and WALK out the front door into the sunshine and go for a RUN along the beach. My endorphins would flow, I’d sweat and I wouldn’t have to look out for cracks or dips in the ground that my now redundant wheelchair would usually have trouble with. I’d come home, freshen up and drive (after the appropriate lessons and licenses of course!) into town to meet up with a friend. We’d WALK together and I’d order a coffee, not having to worry about my weak arm shaking when I lift the cup of burning hot liquid to my lips. All of this would happen without people staring at me as they go by. I would blissfully blend into the background. Noone would give me a pity smile, in fact no one will notice me at all. I would then WALK into a store that I normally couldn’t access in my wheelchair before due to steps or a cramped layout. If I find something I like, I can try it on in the changing rooms instead of buying it, taking it home, then trying it on. After a bit of shopping I’ll drive home and start to prepare dinner. I suspect it will only be a simple meal as I’ve never been able to cook due to my weak and unstable arms. After eating my home cooked meal, I’d then change into something fancy (by myself) and start to get ready for a night out. I’d order a normal non-wheelchair taxi to take me to meet my friends at a club. I’ll be able to wear heels for the first time, so I might be ambling around like a baby giraffe. Finally, I would do what I’ve missed so much in life; dance. The joy I got from dancing before I was diagnosed would come flooding back to me as I freely moved my body to the music all night long. I’d then stumble tiredly back into a taxi to take me home where I’d get into bed by myself, fall asleep, then wake up and start the whole day again.
I know it’s not a normal fantasy. There’s no rockstars or mansions, but it’s a normal life. My stem cell treatment fantasy.
Most people don’t like being labelled as ‘ists’; sexist, racist, homophobic…ist. Have you ever considered whether you’re an ‘ableist’? That’s right, there’s another word to make you feel guilty about your privileged status. This time, this privilege comes from having been born healthy or not having been involved in a major accident. Statistically, there’s a large chance you are an ableist, and according to the blogger ‘Bitch on Wheels’, you carry an invisible ableist back pack (which you can easily carry because you’re physically healthy enough to). I came across this list of privileges and thought it would be a bit of fun to describe my experiences with some of the items included.
A bit of back story is needed of course. I am ultimately better than you because I am not an ableist. I have a physical disability called Muscular Dystrophy. It basically means the proteins in my muscles deteriorate over time, making my whole body (from the neck down) weaker. This leads to me losing the ability to do normal things such as walking, bending, reaching, and somersaulting. I was diagnosed when I was 12 and currently spend the majority of my time in a wheelchair. It’s become normal for me, I’ve adapted, because I have no other choice. However, there are some things that I shouldn’t HAVE to adapt to, as they are discriminatory and condescending, and this is where the ableist’s back pack comes in.
I’m only going to address the items that most apply to my situation, but if you’d like to see the entire list, check out Bitch on Wheel’s blog here: http://exposingableism.wordpress.com/2009/10/12/the-invisible-backpack-of-able-bodied-privilege-checklist/
I’m guessing that not a lot of you have to worry about whether you’ll be able to fit into a certain venue, unless of course you’re the Hulk, but I think if that’s the case, you’ve got bigger problems. I have to research most venues before I attend social events. This includes ringing restaurants to set up wheelchair accessible tables, ordering specialised seating at concerts, and asking friends to scour their houses for small steps or difficult doorways. I miss out on many social gatherings due to their locations, which I’ve come to accept, but there’s still a bitter stab of disappointment when I realise I’ll be missing out on a fun beach party or bonfire.
Now this might not seem strange or offensive to you, but imagine if you were called upon to represent a group of people because of something you were born with. Would you feel comfortable representing everyone with brown eyes? Or everyone who is left handed? Of course I’m completely in support of anyone who chooses to speak for those with disabilities. Disability advocates have made the world a better place for me, and without them, I wouldn’t have ramps built at my university, or government funded help. However, I have been approached many times to speak on behalf of those with Muscular Dystrophy, wheelchair users, or people with varying disabilities, simply because I was born with it. I don’t feel that I can speak for others. Everyone’s experiences are different, and my story doesn’t represent everyone’s.
This is a major item for me. This is where the condescending nature of people is revealed. Before I continue, I need to say that 99% of people do not mean any harm when they talk to me like a child, they’re simply ignorant of their behaviour. This isn’t a case of people being mean or abusive, it’s a lack of insight into the lives of those disabled people they’re talking to or interacting with. I’ve had people rub the top of my head, pat my shoulder, talk slowly and loudly to me, and completely ignore me and talk to whoever is with me at the time. It even happens with medical professionals. These are people who should know better, yet I’ve still had doctors address my parents with questions about my health whilst I sit there, staring straight at them, mouth agape. Along with the blatant condescending treatment, the amount of times I’ve heard the words ‘inspiration’ ‘proud’ and ‘brave’ be thrown around will make you feel a bit queasy. I am very proud of myself and how far I’ve come, because it would have been much easier for me to curl up in bed and refuse to open the curtains (although there have been periods in which I did this). However, when people congratulate me for doing normal things such as graduating high school, going to university, etc, I feel like pointing to the able bodied student next to me and saying ‘We both had to do the same work and pass the same tests’. I didn’t get where I am today because of my disability. I got here in spite of it. I’ve done nothing out of the ordinary. When I conquer Mount Everest, then you can give me a congratulatory high five.
(For a much better and funnier article about ‘Inspiration Porn’ check out one of my favourite writers, Stella Young: http://www.abc.net.au/rampup/articles/2012/07/02/3537035.htm)
Now that I’ve come to a stage in my life where I’ve completed my degree and I’m comfortable with my skill set, I feel that it’s time to look for a job in which I can utilise these skills, and make a step towards procuring a successful and fulfilling career in my field of interest. In fantasy land, everyone is employed based on their skills, experience, personality and work ethic. Skin colour, gender, background or disability isn’t a factor considered by the employer in fantasy land. Also, there are fairy floss trees and unicorns giving kittens free rides. Unfortunately, this is the real world and I have to be realistic about who will employ me. Even I know, if I was an employer and was presented with two candidates of equal worth and quality with regards to what the company wants, I would pick the able bodied applicant. It’s just easier. Desks don’t have to be altered, ramps don’t have to be installed, and special circumstances don’t have to be considered. So when it comes to employment, I know it’s going to be a tough road with lots of rejection and unfair judgement, but I’m going to have to suck it up and trudge on.
To be honest, this is an issue I still struggle with. I’m often uncomfortable when I see stories in the media about someone having a terrible accident, becoming disabled in some way, and then having their partner described as ‘inspirational’ for staying with them. Surely, if you loved someone enough, you wouldn’t think twice about caring for them in that situation. It makes me feel like if I was to be with anyone, helping me with my condition would be a burden to them because it’s such a big and inspirational task to help someone with a disability. I admit, I have grave doubts and worries about future partners and if I’ll be a burden and whether they’ll resent me, but I feel like these worries will decrease with age and experience.
Contrary to my previous jokes about you all being ableists, I didn’t write this to induce guilt or make you feel bad about complaining about your own lives (although I do have to bite my tongue when people try to sympathise with my situation by saying ‘I know how you feel, I broke my foot once.’). I just thought it was interesting to delve into privileges we don’t know we have. Furthermore, if this can stop just one person from treating those with disabilities in condescending or offensive ways, I feel like I’ve done my good deed for the day. Now I’m off to find those kitten riding unicorns…