I’ve been busy on multiple things this week, but I have read two papers this week that although coming from different approaches, have yet again challenged our ‘white. western society, enlightenment’ tendency for reductionist thinking. This idea is covered quite well (with some nice pics) in Belle Cooper’s online story here. Of course not everyone sees the world like this, and my experience in discussions with Indigenous Australians is a case in point where a world view is quite different. For most Indigenous Australians, it is ALL about connectivity not independence and your individuality. Diversity is all around so why expect everyone/thing to be like you?
The papers on disability this week came from a spirituality/Christian viewpoint, and a secular, postmodern Universal Design (UD)/rehabilitation science critique.
The paper by Prof. Barbara Collins (at Bloorview Children’s, & Bloorview Research Institute in Toronto) sounded a word of caution about treating Universal Design & rehabilitation as ideal solutions. While these are both great movements that are making a positive difference (usually) for people with functional limitations (both with disability and ageing), they still have a foundation in the ideal of independence and push toward a ‘norm.’ Yet as Barbara carefully highlights, for some being able to change the legs you wear is actually an advantage – and they are all part of who YOU are.
In my work on standards for assistive technology I am blessed to have colleagues who remind me that 80%/90% access/inclusion is good, but only if we have a strategy to ensure those outside that have an equitable solution so they get to participate too! As a society diversity is the norm – just where you live, who you live with, your physical, mental and emotional makeup creates endless variation. Collins offers a new way of looking/considering this ever changing interconnectedness (people, place, things etc.) that we all experience as we go from one activity/place/task to another.
Stanley Hauerwas is one of the great modern (and still alive) theologians and ethicists with a particular interest in the vulnerable and those of varying ability. In his article on the ABC Religion & Ethics site (12 Mar 2015), What love looks like: vulnerability, disability and the witness of Jean Vanier, Hauerwas provides a very well thought out and reasoned reflection that intersects with Collin’s work. It has some heavy theology (‘faith seeking understanding’ – or more literally the study of God) in there, but has some great pragmatic explanations. He draws on the work by Wells & Owen as he explores how often we want to work for peoplewho need help which tends to disempower them (we bring expertise to their problem). Increasingly (e.g. see the NDIS frameworks) there is a belief we need to work with people, so we drop the pretense that we have all the expertise and instead work together to find a better way/place.
But why do we assume there has to be a better way/place? It’s like the people in 1988 who on a cold and rainy night in Glasgow said to me ‘if you had enough faith, God would heal you of your short leg.’ That nearly crashed my faith and belief in God, and my self worth along with it. I was restored by others – some close and many further away – who were happy to be with me and affirm me in my diversity, and my faith. They were happy to acknowledge their failings and vulnerability, they didn’t have all the answers. Now, although I could do without the callouses and limitations that come with my prosthosis, I don’t know if I would be authentically me if it suddenly disappeared! This is who I am and I feel loved and affirmed by many – including God.
The final Being for emerges for Wells & Owen when there seems nothing that you can do to help an individual in need. Yet you dedicate your time, even your life to working to make a difference through research, advocacy, teaching others, prayer and so on, in the hope that in some way it will make a difference to the disadvantaged.
I’ve worked and lived in all four of these domains, in my assemblege (as Collins calls it). I have pretty much abandoned working for people with disability (still work for some organisations, people and institutions who don’t want the with, they just want the answer!). I enjoy working with because I am so interdependent on others to do my best work/thinking etc. and I’ve valued time to just be with some, and share frustrations, hopes and joys.
On those days when I’m yet again doing work ‘pro bono’ I trust that what I’m doing will continue to make a difference for all humans – in our wonderful diversity, even those who struggle with life and their setting. Perhaps I’m being for?