Some of you who follow my work may have noticed I have moved in recent months towards Disability Theology, and dare I say it, Activism. While I have never considered myself to be disabled, I regularly am disabled by numerous conditions that I live with, and have recently come to understand that while I may never receive a diagnosis, I am Autistic. The validity or not of self diagnosis in a world where medical diagnosis for grown women in a cash strapped NHS is nigh on impossible, is not something I want to get into or wish to justify. Needless to say I am more than comfortable describing myself as such given the story of my life, contextual factors and how I now understand it.
Having worked in the field of SEN Education and Therapy for 15 years, I have been steeped in various theories and discussions around Disability Theory for a long time. One of the main takeaways, and a framework I strongly champion, is the Social Model of Disability. In a nutshell, this means it is not a person and their disability that disables them, but society and the infrastructure around them. A wheelchair user is not disabled because they use a wheelchair to reach a raised platform, they are disabled because there are only stairs and not a ramp to reach it. See how that works?
The more I reflect on this, the more I want to take it one step further. What makes a person disabled? Is it because they have a set of indicators the relevant diagnostic manual allocates to a diagnosable condition which society then designates a disability? There are a lot of barriers for many people to even get to that point, does that mean they must not be disabled if they don’t? What if no diagnosis can be found, or agreed upon, or if the current DSM hasn’t yet included their particular set of indicators?
I may have a day where I have no issues at all, my neurodiversity has no impact on my life, I experience no aspect of disability. I may have a day when, because of the huge traumas I have experienced in my life and the potential for triggers I live with every day, I have to walk with a stick, I can barely leave my house and I am most certainly disabled. For others, their experience of disability may be much more clear cut. For many, it is as complex as this and even more so.
We have moved in many areas to talk about spectrums, scales and journeys. This is in recognition that we need to view human experiences in a more fluid, flexible way. I suggest we need to apply this to disability also. We need to give much more thought to what disability is, how we experience it, is it a permanent state of existence or is it a spectrum of potential states? I don’t have the answers, but I do know the conversation towards a more inclusive society, even within our own disabled society, could do with starting here. While ‘What is your disability?’ is still asked of those contributing to Disability Studies and Theology, we’re going to have issues …
I can only speak to my own experience and understanding, and it will be different to many I am sure. Am I diagnosed or ‘labelled’ as disabled, no. Am I sometimes disabled, absolutely. I’ve blogged about it before, for example here. Am I disabled enough to be a Disability Theologian or Disability Activist? For some, no. For others, my lived experience and the weight of my words are credentials enough. For those, I continue to speak.
Peace be with you