Skip to main content

From scrounger to citizen

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.

Labels:

Comments

Post a Comment

Popular posts from this blog

Sickness and the Social Model of Disability

This is the first part in a series of blog posts that will explore the uneasy relationship between chronic illness and the social model of disability. From my perspective as a Sick person (more on that controversial word next time) I will explore why people with chronic illness often feel excluded from the Disability Rights Movement (DRM) that emerged out of the social model. But rather than reject the social model I’ll discuss how we, the Sick community, could claim it for ourselves and what a social model of chronic illness would look like. The crucial distinction between impairment and disability lies at the heart of the revolutionary Social Model of Disability that emerged in the 1970s – the model that underpins the disability rights and independent living movements. To paraphrase it simply, impairment is loss of bodily function, whereas disability is disadvantage imposed upon people with impairments due to hostile social attitudes or inaccessible physical environments. 
52 comments
Read more

The politics of stigma with ME/CFS

Last month my “shocking” report with Action for ME, Close to Collapse was released, showing the massive failure of the UK social care system to meet the needs of people with the chronic illness ME (otherwise known by the dreadful term Chronic Fatigue Syndrome) For anyone new to M.E., forget the implication that we’re just “tired all the time”. ME is extremely debilitating, both physically and mentally. In fact, research shows the ME patient population has lower scores for physical function and quality of life of any chronic disease group . So 97% of the 850 people with ME who took my survey needed help with 2 or more activities of daily living like going to the toilet, dressing or getting to a local shop. In terms of the Care Act, this means they met the main threshold of eligibility for social care in England.  Yet only 6% were receiving a social care package.  The news was not “shocking” to the ME community. Neglect, lack of support and even hostility from healt
20 comments
Read more

Fulfilling Potential? ESA and the fate of the Work-Related Activity Group

We want Support, not Sanctions (Click here to tell your MP if you agree) The report into Employment and Support Allowance (ESA) that I’ve spent much of the last year producing has been released today. It reveals one more piece of the jigsaw of attacks on the dignity and livelihoods of disabled people under this Government (the scrapping of Disability Living Allowance, the closure of the Independent Living Fund, the notorious Work Capability Assessment and the equally infamous ‘Bedroom Tax’ being others). I have looked at the experience of sick and disabled people like myself, subjected to an aspect of ESA policy that promised to empower us, lift us out of poverty and include us in society. That is, the creation of the Work Related Activity Group (WRAG), which sends us on back-to-work schemes as a condition of receiving sickness benefit (or ESA). Just 5% of us in the WRAG on the main scheme – the Work Programme - have moved into work since 2011. I wrote this report to
4 comments
Read more