I sometimes think about support for disabled people and imagine what it would be like if we decided to start from the question: What does this person need to do the things they want to do? How much care would enable them to work, participate and be as independent as possible? What housing do they need to ensure their bodies work as well as they could? What kind of school would be best for this child? How could we help them work?

Because that is not how these systems work at the moment. Currently, every claim is an ordeal so as to not incentivise it too much. The argument goes that if you make it too easy to, for example, get a place at the most appropriate out-of-borough school, or be provided with an adapted bus to get there, or disability benefits to compensate for the proven higher day-to-day cost of being disabled, then local or national government will be over-run with people claiming they are eligible. The clamour to receive these perks will overwhelm the finances of the nation. So the difficulty in getting them isn’t just a byproduct of fewer staff or careful processes, it’s on purpose.

It is up to every person to PROVE they need support or a particular thing, and over time they will accept having to describe in great detail what they cannot do, to be grateful for everything they are offered, and to fear it being taken away. if they try to campaign for a different way of doing things, they will be told it’s necessary to avoid fraud.

Meanwhile the ordeals continue. We fill in a new 40 page form every few years for Disabled Living Allowance, as if we have never applied before despite Ben’s condition being lifelong and unchanged. We approach every Education, Health and Care Plan review mindful that we need to justify his school placement. When my Carers Allowance is stopped with no notice, I await the letter through the post that will explain how I justify that I still qualify. When we apply to replace a stolen Blue Badge we are unsurprised that it takes two months. When a social worker says we need more hours of support, we accept the allocation (by a nameless, faceless ‘panel’) of half as many hours as she suggested.

The people in government are so busy performing the roles of guardians of public finances they’ve forgotten all about actual people at the receiving end (or not), and they don’t have the empathy required to imagine what they don’t experience. So the ordeals continue, and the costs go up, and fraudulent claims for disability benefits are always lower than tax avoidance by rich people, and on we go. Meanwhile the state spend millions on defending tribunal claims and assessing benefit claimants, and disabled people accept less than they deserve (in empathy and money). The system ends up working well for few people, having subjected them to multiple ordeals, and is wrapped up in rhetoric that helps no one. If you claim disability benefits, or interact with social services, or have tried to get educational support for your kid with SEND, you know what ordeals feel like. And if you haven’t, let me tell you it feels quite shit.

 This very good article is where I first heard about ‘ordeals’, as described by political scientists, and as Sam Freedman says ‘There is a constant need to tell the stories of those who need state support the most, to show what it’s like to experience scarcity, to show that creating more fear and anxiety makes it harder for people to help themselves, to keep battering away at the empathy gap.’

(Peak geriatric millennial selfie of us to help breach the empathy gap)