Sometimes life can take pretty sharp twists and turns. My life was going ok, I was busy working on my PhD studies, preparing to go to the AGOSCI Conference and was working on a paper with a colleague that we were presenting at the conference. A few things were happening with my support workers that I had to deal with. The support worker who was going with me to Sydney suddenly resigned a month before the conference. This meant I had to sort out somebody else to go and flights, plus accommodation. Apart from all these additional things demanding my attention, I thought my studies were going along ok, yet at times, it felt I was just managing keeping my head above water.
Sydney went well. I met many new friends, caught up with old ones and networked with many at the conference. Even got in some sightseeing. I was somewhat exhausted on return and it took over a week to re-energise again. In the second week back, the best way I can explain it is that, a perfect storm happened. As a result of many different events merging together, I had to figure out and come to terms with what was happening and then make some difficult decisions quickly. This is not the place to go into details but the situation required much prayer, consideration, negotiations and talking to close friends. It came apparent that my PhD would be best undertaken at Flinders University rather than at UniSA. So, I have withdrawn from my PhD at UniSA and am in the progress to apply to be accepted to do my PhD at Flinders to start in July this year. The research project will be along similar the lines of the one I was working on at UniSA.
Today is the first official of day of my PhD. The topic it is: An investigate into the experience of sexuality and intimacy of people with Cerebral Palsy who rely AAC to communicate. It has been a long time coming since the first time I met Dr. John Hickman at the launch of his autobiography called “One Step at a Time” and the notion of someday me doing a PhD, which I discussed in a keynote I delivered at the Pathway11 Conference in Adelaide last year.
Dr. Vicki Crowley, my primary supervisor, and I have been working together over the past year to get to this point. I have been working on building a good support network and I am honored to have high quality people in my support team.
I know that there is going to be high mountain tops as well as deep dark valleys in this epic journey through many fields of knowledge, experience and the unknown…… Watch out fieldmice?
It feels like a dawn of a new era in my life. No, I’m not talking about the End of the World Wooha. I guess most seek out good service people who understand their jobs well enough to give excellence service, service that let you focus on the job at hand. Yet, this is particular the case with someone with a disability who is trying to make a go at participating in society to the maximum of their abilities. Too often the focus of people with disabilities is dominantly on their disability support requirements rather than on their social participation.
Sadly, I think it is difficult to find people who work in the disability field with strong empathy and understanding of living with a disability. When you do find such people they soon become your strongest allies, a main supporting pillar in your social participation and become important to gaining and maintaining your social capital.
This week as I try to prepare for Christmas, not knowing where I will spend Christmas Day, starting initial investigations of my PhD with all the uncertainties that it brings and the training of new support workers, two of my support pillars seemed to crumble. Two guys have moved on to new jobs – a blow to my social capital. Yet, although in this time of feeling uncertain, my faith in Christ can strengthen as I know that I can trust Him to provide for my every need, even in this tricky season of transition.
Yesterday was an interesting day indeed. The morning was pretty cruisy. I knew that I had a meeting in town in the afternoon which I was planning to catch a bus to, so I spent most of the day playing with a music program that I’m trying to master. I got part way through a tutorial and decided it was time to start to make a move to catch the bus, allowing me over an hour to get to my meeting, when suddenly a reminder went off on my phone. I had fifteen minutes to get to the meeting! As I raced out the door to the bus, on the off chance I texted David, my friend a taxi driver, to see if he was in the area to zoom me into town. Not stopping I headed up the street. Most of the buses that go along my street are wheelchair accessible but the one that came wasn’t. I ended up catching one on the next main road. Finally, arriving at the place I thought I was supposed to be to find that I got the venue wrong too. The meeting was postponed until next week.
The afternoon was going downhill. Having nothing else to do and being a very hot day, I caught a bus home. What else could go wrong? Oh yes, the bus I caught turned out to be an express and went right pass my stop and dropped me off about a kilometre from my house. The thought crossed my mind to try to catch a bus on the other side of the road back to my stop but I thought better and just drove home, calling in on a friend on the way for a chat and a glass of cold water. This was when the afternoon started to turn around. It was lovely to have a talk with my friend, Andrea. On my return home, there was an e-mail from the University of South Australia waiting in my inbox. It was no less than an offer for me to undertake a Doctorate of Philosophy (Communication) with an Australian Postgraduate Award (APA) Scholarship commencing in February. The acceptance form was quickly filled in and returned.
Let the PHD journey begin! Please feel free to follow me on this journey right here on www.thedazz.com
Here is a song that I wrote and used for the keynote that I delivered at the Pathways11 Conference late last month. The song is called Knocking on a PhD Door and the vocals are by Ben McCall, one of my support workers. Download and enjoy it.
Sunday evening I went to see the movie The Sessions with a couple friends. It is an incredible movie that touches you yet at the same time makes you think. The main theme of the movie is sexuality and disability, and it also brings in Catholicism. I think a PhD could be undertaken on the movie alone as highlights a whole host of issues surrounding each of these themes. These issues range from competence of support workers, privacy, the extra effort people with disabilities have to face on a daily base to achieve, the need for hugs (I definitely needed one after the movie), mentoring, the roles of the church to companionship of a pet. I could go on and on naming all the kinds of issues.
On Monday morning, Life Matters interview Cheryl Cohen Greene, who Helen Hunt played in the movie, discussing her career as a professional sex surrogate. Listening to her on the podcast I thought Helen Hunt portrayed Cheryl very well with the same energy about her. One of the things that stood out, and one that I have been thinking on recently, is the need for education about sex. Many of us are told growing up that “it will come to you when you can it and you will figure out.” This assumes that is good communication, a willingness/ability to explore and at least one partner having experience. We, people with disabilities, are provided to some degree the training and resources to live as independently as possible and for pursuing an occupation of some sort, yet when it comes to sexuality and relationships we are left to our own devices in most cases. This leaves me questioning, could such education improve peoples’ lives?
Saturday, I went in the Adelaide Gay Pride March. Some might be surprised by this. I marched in my purple tights, black rara skirt, bright pink “I’m too sexy for my wheelchair” t-shirt and a yellow sequined balaclava. The reading group, that I am in, marched all dressed up with coloured balaclavas in support for the Pussy Riot band. Even with my head covered I knew there was no way I could hide my identity due to my unmistakable wheelchair. For me, I was also there to side with the LGBTIQ community. This is not suppose to be a “coming out” blog entry, yet for those who are wondering, I connect towards the end of the acronym—I’ll leave you to ponder that.
What I really want to write on is the treatment the LBGTIQ community receive from many Christians. For some time I have struggled with the way many people in the LBGTIQ community are treated by many Christians. Growing up as a Christian I was taught to believe that God loves everyone no matter what and being a straight family man was the “right” way to be. Yet, reading the Bible my understanding is, when Jesus was walking the Earth he did some radical stuff and also had a radical message of acceptance for all. He hung around with people who were on the Fringes and joined Feasts of the poor. Yes, poor in riches but also poor in many other ways too.
True, he calmed the sea yet he didn’t shy away from rocking the boat and going against traditions when it came to injustices. In all that He did He showed love for all and He calls His followers to do the same. So, it has never sit right with me how people can say “God hates…” certain people and call themselves Christians. To me its not loving your neighbour. Yes, God wants loving relationships with everyone. When we do things to stop this from happening, this is what we call sin, what goes against God’s wishes for us. We all mess up but this is where God’s grace comes into play. I have diverged a bit here.
For a long time I wrestled with how the church has treated many people from the LBGTIQ community, people who are on the fringes of society, and could not reconcile with this with the Jesus I know. When I hear and see one group trying to preach the Gospel to another group in a non-loving manner my heart breaks for both groups, which I saw at the march. When a gay person tells me that they left the church because they felt unwelcomed due to them being gay, my heart breaks too and I’m saddened. It is not the way of my Jesus!
I think God has been guiding me over some years to gain a deeper understanding of His love and longing for this community. I am seeing that the prejudices and discrimination faced by people with disabilities are very similar to the ones faced by people in the LBGTIQ community. Through forming friendships with various people within the LBGTIQ community, watching documentaries such as Scarlet Road and the series My Transsexual Summer, and recently joining a cross universities reading group delving into literature relating to Queer Theory, I have come to a point where I want to explore this more from a Christian perspective. Two website which I am finding useful in this understanding is Canyon Walker Connections and Uniting Christians GBTIQ Australian Youth. I am looking forward to researching this topic in greater depth and, no doubt, I will blog on it more in the future.
The Sessions (2012) is definitely a movie I want to see. I think it will be a movie that will be useful in my PhD as it seems to touch on three main topics, which might be taboo to some yet I find fascinating. These three are Christianity, disability and sexuality.
Just seeing trailer, one thing I find interesting already, a part from three main three topics, is because the man cannot get into the confessional booth the man spoke to his priest about his confessions and sexual desires out in the middle of the church where others could hear. I’m interested in where they go with that in the movie among other things
If you have seen the movie please feel free to make a comment……
I had the privilege of hanging out with Rod Haig over the last weekend at the Black Stump Festival and to see him perform this routine on mental health on the Friday evening. Being so impressed by it I invited to perform it again in the workshop I lead. Thanks Rod!!!
After upgrade to iOS 6.0 I noticed that my iPhone sending SMS messages ok but not iMessages and this may have been on happening even before the upgrade. A quick search revealed a simple, yet somewhat embarrassing, solution – make sure, the feature is turn on. Note that iMessage has to be on for iMessage to work. To turn on iMessage go to: settings –> messages–> and make sure iMessage is on. It worked for me!
This morning my wheelchair was taken to be fixed and checked over before going to Black Stump this weekend, so I thought, being stuck in my manual wheelchair not really being able to use my computer effectively, I’ll catch a taxi down to Henley Square on the beach for a coffee while I wait for my chair. It was sobering to read on my phone on the way to the beach on Matt’s Blog, a friend in London, he also had his electric wheelchair picked up today for repairs. I find it difficult to be without my chair for a morning but Matt has been without his for a few months. Man! It was very pleasant to enjoy a coffee by the sea in the warmth of the sun. This summer I aim to do more short timeouts like this morning.
Last week I was seriously reconsidering whether to undertake further studies towards a PhD and praying (talking to God) about my directions and, as usual, He answered. Over the weekend, I watched two movies. The first I bought off iTunes, Invicus(2009) an inspiring true story of how Nelson Mandela joined forces with the captain of South Africa’s rugby team to help unite their country. The second was shown at my church as a fundraiser to support the work of Prison Fellowship. The movie was called Courageous. This was a Christian based film and, as you might expect, in parts it gets a bit cheesy. Nevertheless, it is a fantastic movie and is a must-watch for all, especially for men. These two movies spoke to me that life can be bloody difficult at times yet this is when life often can really happen, in the struggles, and I need to man up. I was also reminded that God has the big picture and is in control, in other words he has our back, so by putting our trust in Him to guide us through the fog of turmoil and the unknown, we can achieve extraordinary things and truly have life abundantly.
* The poem Invictus, by British poet William Ernest Henley,