I am a survivor of “welfare reform”. I already had half a lifetime of experience of the disability benefit system when the disaster of the Work Capability Assessment and the ESA system struck. Being on Incapacity Benefit since the early 1990s was never cushy. It certainly wasn’t the lifestyle of “languishing” or being “parked” on benefits, that politicians liked to depict. My life was about striving to get through each day against really tough health challenges. But at least there was a safety net for people like me who couldn’t work due to ill health, and it functioned reasonably well, if far from perfectly.
In 2011 all that changed for me, when I was “migrated” to the new benefit system. I’ve told the details of my story elsewhere. The best way I can sum up the years between 2011 and 2015 is that I navigated a hostile environment: a system that appeared designed to trip me up and set me up for punishment at every turn; designed to eat away at my hard-won resilience and take a sledgehammer to my morale. Dismantling the safety net, it seems, was part of the plan. As I say, I survived. But I survived with guilt, because I know that thousands didn’t.
2011 was also the beginning of my political awakening. I realised that my experience was part of a plan by my government to target people like me, with invisible chronic health conditions, both physical and mental, and that there was a PR strategy in place to deceive the general public into believing people like me were fake disabled people, part of the undeserving hordes of skivers and scroungers.
What was chilling back then is that so few people questioned the plan or asked what was really happening to us. I realised that the reason politicians of all stripes were convinced that sanctioning and starving disabled people was an effective way of getting us into work, was because the people making those decisions had no idea about us, or what our lives were like. That’s how they swallowed the lie that we were lazy and unmotivated; that we needed a nudge and some tough love to get us “activated”.
People living with long term physical and mental health challenges are never in the room when welfare policy gets discussed. We never even get close to the corridors of power. We lead hidden lives, restricted by societal barriers and diminished by ill health. The gap between our lives and the privileged, healthy lives of those who dictate social policy was part of the reason this catastrophe could happen. For we now know that the cumulative impact of welfare reform has cost many lives and blighted thousands more. The evidence of increased suicide and mental distress is quantified in the sober columns of medical journals, and is the subject of a report by the United Nations.
That’s why I am passionate about telling the truth about the lives of ill and disabled people, and about making those in power sit up and listen to us. I have devoted a lot of what little energy I have to collecting and presenting robust evidence of the impact of government policies on our lives. I’m proud to be a commissioner for the White Paper on social security because it is the first time, to my knowledge, that people with lived experience of have genuinely been put in charge of creating a system that works for us, not against us.