Category Archives: Miscellaneous

My stem cell treatment fantasy

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.

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Your privileges as a non-cripple

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 can, if I wish, arrange to attend social events without worrying if they are accessible to me.

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.

  • I am not called upon to speak as the token person for people of my mobility level

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.

  • I can do well in a challenging situation without being called an ‘inspiration’

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)

  • I can be reasonably sure that my physical ability level will not discourage potential employers from hiring me

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.

  • I can choose to share my life with someone without it being a disadvantage to them

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…

My mother flippin’ blog

So I’ve decided to start a blog. As you all know, all blogs are amazingly successful and contribute to the collective intelligence of all human kind, so… you’re welcome.

I basically started this as a way to express some things that I might not be able to adequately do on video. Plus, you can’t always access videos. This way you can read my rants in the toilet at work. Once again, you’re welcome.

I’m passionate about science communication and hope to be doing some proper articles on specific issues, theories and ideas. Of course, I welcome any suggestions on topics as well.

Let the experiment begin!