A World Not Designed For Us

 

A World Not Designed For Us

There is a window in my room. On the days when my body refuses everything else, when getting up is impossible and the world has shrunk to four walls and a ceiling, I sit and watch through it. If the sun is out, I see people passing. Children playing. Ordinary life unfolding at a distance. It feels close enough to touch, yet completely out of reach.

This is what disability looks like from the inside. Not laziness. Not a lifestyle choice. Not a calculation about whether work pays more than support. It is a window. And sometimes, no matter how strong your will is, you simply cannot get to the other side of it.

I live with PTSD from military service, fibromyalgia, Functional Neurological Disorder and acquired brain damage following a ruptured brain aneurysm. There are weeks when my body confines me completely. The world carries on without me. The isolation is not just physical. It reaches back into eleven months of hospital admissions and brings that darkness forward into the present.

What much of the current government narrative, often amplified by sections of the media, fails to grasp is this. I do not want to be there. Nobody does.

When the window opens, everything changes.

Episodic illness feels like hope with a countdown attached. Your body gives you an hour, perhaps two, occasionally a day if you are fortunate. In that time you try to do everything. Write. Think. Contribute. Be more than your diagnoses. Be a father, a husband, a writer. Be someone with something to offer and the ability to offer it.

You move quickly because you know it may close again without warning.

That is not laziness. It is urgency. It is someone fighting to take part in the world.

I write in those windows. When I do, something shifts. I am not a patient. I am not a claimant. I am not a list of conditions on a file. I am a writer whose work is read across seven continents by people I will never meet, people who found something in my words that mattered. In those moments I feel capable. Useful. Human.

This is where the system fails people like me.

The Access to Work scheme exists to support disabled people into employment. On paper, it sounds constructive. In practice, it is built around assumptions that do not reflect the reality of episodic illness. It assumes stable hours, predictable attendance and a fixed employer. It was designed for a model of disability that is static and a model of work that is continuous.

It was not designed for fluctuation.

It was not designed for someone who might produce meaningful work for two hours on a Tuesday and then be unable to get out of bed for the following week. It was not designed for self-employment as a way of managing health, which for many disabled people is not a preference but the only viable route into working life.

When support structures demand consistency from bodies that cannot provide it, support does not arrive. Instead, the limited energy available is consumed by forms, assessments and procedural demands. The brief window of capability is spent proving eligibility to a system that often begins from a position of doubt.

The prevailing narrative suggests disabled people need to be pushed towards work. That the obstacle is attitude. That pressure and conditionality will solve the problem.

That argument is wrong.

It replaces understanding with suspicion. It measures disabled lives against able-bodied standards and calls the difference a failing. It drains energy and dignity from people already managing instability that most decision-makers will never experience.

Nobody lying in bed watching life through a window is there by choice. Nobody who has felt the urgency of those opening hours is choosing inactivity. The desire to contribute is present. The capacity is inconsistent.

What disabled people need is not pressure but systems that reflect reality. Support built around capacity rather than suspicion. Self-employment frameworks that recognise flexibility as a medical necessity. Assessment processes that understand volatility, that a person can be bed bound one week and productive the next, and that both states are equally true.

We do not want to observe life from behind glass. We want to participate in it.

The world was not designed for us. It can be.

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