A personal journey
I have had a severe chronic health condition since 1988 – the whole of my adult life.
For much of that time I was embarrassed about relying on Incapacity Benefits, but not able to pinpoint the shame I felt. For most of these years I have not been able to work, socialise normally, often leave the house. But until quite recently I didn’t really think of myself as disabled as defined by the social model of disability.
All that changed 5 years ago with UK welfare reforms.
With the migration from Incapacity Benefit to ESA in 2011 my identity was explicitly challenged. Through multiple encounters with Atos, DWP, Jobcentre and Work Programme contractors I was framed as a suspected malingerer, workshy and cheat. I was punished with benefit sanctions for being too ill to attend employment programmes that were designed to correct my workshy nature.
As I battled to resist this aggressive and crippling process of stigmatisation, what saved my mental health was the framework of disability rights. But to embrace it, I had to perform a kind of mental gymnastics. I went from protesting that I’m not lazy or criminal, to asserting the valuable work I do perform as a mother and unpaid researcher, to eventually being able to identify the socially and culturally constructed barriers that exclude me from participating in life as fully as I would like to, even within the intractable limits of my health condition. Only from this point can I begin to formulate demands for inclusion based on a sense of my rights.
I’m not there yet, but I am on a journey – a journey from shame at not joining in and not “pulling my weight” to developing a sense of my own entitlement (yes, entitlement!) to join in and take part. Part of this involves developing a sense of the duty of others to remove obstacles or help me find adjustments where this is possible.
What took me so long to identify with the disability rights movement, you may well ask? There are many reasons. One of them is this:
The social model of disability was developed by people who could more easily pinpoint the structures that excluded them – the presence of stairs for wheelchair users, or prejudice based on looking “different”, for example. With an illness that’s invisible, inherently debilitating and not easily accommodated by ramps or assistive technology or the removal of prejudice, it’s much more of a mental feat to embrace the social model principles.
It needs to be stretched and updated a little. But the social model belongs to us all.
Between 2011 and 2013 I co-led a local peer support group. I witnessed the devastation of welfare reform on my community. I have seen people turn in on themselves through fear of surveillance and shame of claiming benefits. I’ve seen how the soul destroying work of navigating a hostile welfare system drains away plans and dreams for a better life. I’ve seen people’s self-esteem eroded by the feeling of being a burden on society. And this is before we even factor in the actual material cuts to financial support that limit choices and place a cap on ambition.
My journey is not yet over. But I want to share it with others who may be at different points on the same road. Welfare reforms have inculcated a sense of undeservingness among many disabled people. I want us to develop a collective consciousness of our entitlement to participate and belong.