Friday, March 11, 2011

Born This Way

The catchy dance-pop song by Lady Gaga has been stuck in my head for quite a while now. It's got a good verse, great bridge and and an awesome chorus - well, in my opinion anyway - my tastes are pretty broad but sometimes don't agree with many, heh.

I just want to reflect on the title of this song. The song is actually about being bold about not being born 'perfect' - specifically, in regards to homosexuality. I don't want to bring any discussion about religion and homosexuality, because I am Christian, but I don't believe in discrimination based on any reason outside of pure competence, and I don't support homophobia. But I digress; the main reason why I brought this up was actually about disability.

Over the past five weeks I had been attached to a disability service that caters primarily for school leavers (over 18 years old), providing them with a variety of programs that are mainly recreational in nature (such as team sports and reading) but also give an opportunity for these people to develop some important life skills. As far as is possible, the service's aim is to promote independence of it's users, through the development of a person-centred goals plan and the constant follow-up of the progress made in these goals. Goals could include learning how to make a cup of coffee, using the internet and learning financial skills.
For the majority, it is realistically unlikely that they will achieve full independence - but the progress they make is remarkable, and in some cases, independence is a reality.
What is interesting is that these users have profiles on them, with data and information about them collected through the years at the service, or if they are new, supplied through their parents or carers, as well as their previous school. These profiles begin with the user's name and date of birth, followed by their medical condition, then other details.

The medical condition means next to nothing.

Each individual is so different, and these 'labels' box them, in the common mind, into a stereotyped behaviour expected of them. An example is a young woman who has Prader-Willi Syndrome; they are known for their inability to resist eating anything and everything, but this woman displayed none of this behaviour, and through five weeks of observation, I saw no efforts whatsoever to obtain more food other than what was already prepared for her. Another is a young man with intellectual disability who nonetheless has a gift for drawing comics and loves Japanese anime - we had quite a lengthy discussion over several days about Naruto, which eventually tired me out as my suspension of belief and immersion was not as deep as his.

What is wonderful to see is that every single user at this service is happy and satisfied. Their quality of life is greater than what many 'normal' people experience. The day begins with everyone streaming into the centre, greeting fellow users and staff alike - and in the case of one young man, doing so with quite intricate handshake combinations - and heading into their programs, which are group activities of 3-10 other users. The rest of the day is spent in the above mentioned recreational activities and working towards their goals; and at the end, the day is over, people leave to go to their group homes or are picked up by parents, and everyone looks forward to coming back the next day. The goals plan helps to ensure that the users are not being stagnant and just 'going through the days' like many people may.

Kudos has to be given to the staff as well; it is an enjoyable job but it is tiring and at times difficult. I'm not one to romanticise everything, and this place has it's ups-and-downs - unpredictable behaviour leading to assault and abuse, as well as anger and absconding (leaving the program without letting staff know), and other unpredictable events - these are not common experiences but are nonetheless present, and strategies exist to deal with these because they happen. The staff there deal with this marvelously and are, like many sectors of the health sector, often understaffed in their programs, and do the best they can for the users.

For sure, this attachment has certainly broadened my horizons significantly. I've not really been in contact with people with a disability, so by the end of the five weeks I felt a lot more comfortable with those with a disability, as well as having obtained a wonderful learning experience about disability, the people it affects, the service and how it is accessed. It can be a bit intimidating at first - we had an orientation day when we started and were joined with several volunteers; by the end of our fifth week, I noticed that one of the volunteers was waiting outside, and so struck up a conversation; it turned out that he felt too overwhelmed with dealing with so many people with a disability, so instead of being on the programs he raised this with the staff and felt more comfortable in helping in an administrative capacity - and so was contributing to the service through this way. I think this is quite valid (well, perhaps not for us as we were there primarily to learn) and important to realise - that volunteer efforts in a service based around a single focus (such as Doctors Without Borders) often can work wonders in supportive areas of the organisation requiring just as much help as the frontline.

So it was with a sad note that my partner and I (two of us were at the centre) had our last day, bade our farewells and promised we'd do what we can to visit again. And so in our sixth week of the Medicine in Context rotation, we split up, get new partners, and spend another five weeks in another attachment - for me, a mental health service. I guess once I've finished up with that, I'll report back - but hey, it's pretty hard to top this :)

1 comment:

  1. Hey, I've just stumbled across your blog and I just wanted to say I've really enjoyed reading it. Your stories are funny and interesting, I particularly enjoyed this post, it was good to see that medicine is important and has relevance outside the hospital system.