While Disability Becomes an Identity Online, Disabled People Are Being Pushed Further Aside

 

There is a contradiction developing around disability.

On social media, diagnoses are increasingly displayed as identities. They appear in usernames, biographies, clothing, tattoos and carefully constructed online personas. Some people describe themselves through a medical condition before telling us anything else about who they are.

At the same time, those of us living with serious disability repeatedly have to insist that we are more than our diagnoses.

We are told not to let disability define us.

We are encouraged to work, contribute, remain independent and participate fully in society.

Yet the same society places barriers in front of almost every one of those ambitions.

That contradiction deserves examination.

A diagnosis should explain something, not become everything

I understand marking a difficult period of life with a tattoo.

I understand wanting something that represents survival, adaptation or personal strength. Illness and disability can divide a life into before and after. There is nothing unusual about wanting to record that experience.

What I struggle to understand is the growing tendency to display the diagnosis itself as an identity.

There is an important difference between saying:

“This condition has profoundly affected my life.”

And saying:

“This condition is now how I present myself to the world.”

That remains an individual choice. People are entitled to describe themselves however they wish.

But personal empowerment and effective disability advocacy are not automatically the same thing.

Disabled people have spent decades arguing that we are more than medical labels. We object, rightly, when doctors, employers, officials or members of the public see only what is wrong with us.

It therefore seems contradictory to demand that society look beyond our diagnoses while continually placing those diagnoses at the front of our public identity.

I have seen this happen before

I was diagnosed with PTSD in 1994 after serving in Bosnia.

I was eventually medically discharged from the Army because of it. At the time, there was little meaningful understanding and no effective treatment offered to me. I was left to get on with life as best I could.

By the time I eventually received treatment, my diagnosis had become severe, chronic and complex PTSD.

Treatment did not cure it.

What helped was the education that came with treatment. I learnt what PTSD was doing to me. I began to understand my reactions, recognise patterns and adapt my life around them.

I did not overcome PTSD.

I learnt how to carry it.

Over the years, however, I watched PTSD change within popular culture. It moved from being ignored and misunderstood to becoming widely discussed. That recognition was necessary.

Then, in some corners, it began to acquire an almost cult-like status.

People competed over trauma. Diagnostic language became social language. Complex PTSD was sometimes treated not simply as a different clinical presentation, but as a superior rank within a hierarchy of suffering.

Eventually, much of that settled down.

Now I can see similar patterns developing around Functional Neurological Disorder.

When suspicion becomes self-diagnosis

FND has historically been neglected, misunderstood and too often dismissed.

Greater awareness is essential.

But awareness becomes dangerous when people begin treating a medical diagnosis as something they can claim through identification alone.

I have seen people write words to the effect of:

“Neurology says I do not have FND, but I have the symptoms, so I identify as having FND.”

That is not how diagnosis works.

A person may reasonably suspect FND. They may recognise similarities between their symptoms and those described by diagnosed patients. They may believe a second opinion or further assessment is necessary.

But symptoms alone do not establish FND.

Tremors, seizures, weakness, pain, fatigue, speech problems and mobility difficulties can occur for many different reasons. Diagnostic accuracy matters because adopting the wrong explanation can delay appropriate investigation, treatment or support.

A diagnosis is not validated by how strongly someone identifies with it.

Nor should disagreement from clinicians automatically be treated as proof that the patient is being ignored. Doctors can be wrong, but patients can also be mistaken. Both realities must be allowed to exist.

Without that balance, support communities can become echo chambers in which every symptom confirms the diagnosis and every question is treated as hostility.

That helps nobody.

My conditions do not exist separately

I was already living with severe PTSD and fibromyalgia when I was diagnosed with FND.

As I had done before, I began trying to understand it.

I entered specialist neurological rehabilitation and started learning how FND affected my movement, speech, seizures, fatigue and daily function.

Six months after that diagnosis, while still in neurological rehabilitation, I suffered a ruptured brain aneurysm.

It almost killed me.

I was then left with an acquired brain injury on top of everything else.

At first, it appeared that I would have to learn to manage two new life-changing conditions: FND and brain injury.

It quickly became clear that this was not the task.

I had to learn to manage PTSD, fibromyalgia, FND and acquired brain injury simultaneously.

They do not sit neatly beside one another.

They compound each other.

Pain disrupts sleep and drains energy.

Fatigue reduces my ability to manage pain.

Stress can aggravate functional symptoms.

FND affects movement, speech and physical independence.

Brain injury affects memory, processing, emotional response and my ability to use coping strategies I once relied upon.

A functional seizure consumes physical and cognitive energy. Increased pain creates further stress. Cognitive overload makes it harder to recognise warning signs or remember what I am supposed to do.

One condition can trigger another, which then worsens a third.

This is not a collection of labels.

It is a complicated daily system that must constantly be managed.

That is why I find the online transformation of disability into a badge, trend or identity so difficult to accept.

For some of us, diagnosis is not social currency.

It is information we need in order to survive the day.

But the identity trend is not the greatest problem

The adoption of fashionable diagnoses irritates me.

The wider political and social climate concerns me far more.

Disabled people are increasingly discussed as though we are a problem to be solved.

We are described as economically inactive, dependent, expensive or insufficiently motivated. Benefits are presented as easy to obtain. Rising claims are treated as evidence of widespread exploitation rather than possible evidence of worsening health, inadequate treatment and failing public services.

The language matters.

When politicians and media commentators repeatedly suggest that large numbers of disabled people are avoiding work or receiving support too easily, suspicion becomes normalised.

The public then begins to view disabled people not as citizens facing barriers, but as potential fraudsters whose limitations require proof.

Disability benefits are not simply handed out

Personal Independence Payment is not awarded merely because someone has a diagnosis.

Eligibility is based on how a person’s condition affects specific daily living and mobility activities. Claimants must describe their functional limitations, provide evidence and often undergo an assessment.

The latest official figures show that, over the five years to April 2026, only 43 per cent of new PIP claims made under normal rules resulted in an award. Most new applicants therefore did not receive it.

That is not evidence of a benefit being casually handed out.

Even receiving PIP does not necessarily mean someone is unable to work.

PIP is not an unemployment benefit. It exists to help with the additional costs associated with disability or long-term ill health. A person may qualify while employed, unemployed or unable to work.

Yet public discussion repeatedly collapses all disability support into the assumption that disabled people are being paid not to contribute.

That is both inaccurate and damaging.

“More disabled people should work” ignores why many cannot

Many disabled people want to work.

Work can provide income, independence, structure, purpose and social connection.

But wanting to work does not make work accessible.

In the second quarter of 2025, the employment rate for disabled people in the UK was 52.8 per cent, compared with 82.5 per cent for non-disabled people.

That means disabled people remain far less likely to be in work than non-disabled people.

That difference cannot honestly be explained by motivation alone.

Disabled people face inaccessible buildings, unsuitable working hours, inflexible recruitment systems, employer prejudice, transport barriers and difficulty obtaining reasonable adjustments.

They may also be waiting for medical assessment, treatment, rehabilitation or social care.

Government research found that two in five people receiving incapacity and disability benefits were waiting for treatment for their health conditions. Half of those who were out of work said their ability to work depended upon receiving treatment.

It is unreasonable to criticise disabled people for not returning to work while leaving them on waiting lists for the healthcare that might make work possible.

You cannot demand recovery while withholding rehabilitation.

The support intended to enable work is itself failing

Access to Work exists to help disabled people start or remain in employment by funding practical support such as specialist equipment, workplace assistance and transport.

In principle, it is precisely the kind of scheme needed to reduce employment inequality.

In practice, many applicants have faced severe delays.

A June 2026 report from Parliament’s Public Accounts Committee found that the backlog had reached around 66,000 cases. Applicants were being warned that support could take up to 37 weeks, despite the Department for Work and Pensions having a target of 25 working days.

For someone awaiting equipment or support before beginning a job, that delay can mean losing the opportunity altogether.

An employer may not wait.

A disabled applicant may be judged unreliable before they have even started.

Some workers told the committee that they felt forced to choose between risking their jobs and risking their health by continuing without the adjustments they needed. The committee also heard that the delays were discouraging some employers from hiring disabled people.

The scheme designed to remove a barrier can therefore become another barrier.

The Government announced additional staff to help reduce the backlog. That action was necessary, but it also confirmed the scale of the failure.

Employment is not equal once we enter it

Disabled people who succeed in finding work still face inequality.

The latest detailed Office for National Statistics analysis found that the UK disability pay gap was 12.7 per cent in 2023. Typical hourly earnings were £13.69 for disabled employees, compared with £15.69 for non-disabled employees. The gap had remained broadly stable over the previous decade.

That does not mean every disabled worker is deliberately paid less than a non-disabled colleague doing precisely the same job.

The overall difference reflects several factors, including occupation, working patterns, progression, opportunity and discrimination.

But the outcome remains the same.

Disabled workers earn less on average.

They are told to become independent through employment while entering a labour market in which their work is still valued differently.

Transport can make employment impossible before the day begins

Public transport is another part of the same contradiction.

Disabled people are expected to travel to work, attend appointments and participate in society, yet accessible journeys remain less reliable and more difficult to plan.

Figures from the 2024 National Travel Survey show that disabled adults aged 16 to 59 made 22 per cent fewer journeys than non-disabled adults of the same age. Among those aged 60 and over, the difference rose to 35 per cent.

Those figures do not prove that transport barriers account for every missing journey.

They do show a substantial mobility divide.

A railway station may technically be accessible, but the lift can be broken.

A bus may have a wheelchair space, but it may already be occupied by luggage or pushchairs.

Passenger assistance may be booked, yet nobody arrives.

A workplace may be accessible internally but impossible to reach independently.

Accessibility cannot be judged solely by whether a ramp exists somewhere in the system.

It must be judged by whether a disabled person can complete the journey reliably, safely and with dignity.

Hostility is not merely an online disagreement

The consequences of public rhetoric do not end with benefit policy.

They affect how disabled people are treated in shops, workplaces, neighbourhoods and public spaces.

Police recorded 10,224 disability hate crimes in England and Wales during the year ending March 2025. That was an 8 per cent fall from the previous year, although the Home Office warns that changes in recording practices make long-term comparisons unreliable.

That fall should be acknowledged.

But more than ten thousand recorded offences still represent more than ten thousand incidents in which disability was considered a motivating factor.

Recorded crime also cannot show the full extent of hostility. Many incidents are never reported, never recognised as hate crime or never recorded correctly.

Abuse does not always begin with physical violence.

It can begin with staring, insults, disbelief and public challenges.

Disabled people are accused of exaggerating.

They are questioned for using accessible facilities.

They are abused for moving too slowly.

Wheelchair users are treated as obstructions.

People with non-visible conditions are accused of fraud.

Others are spoken to as though the support they receive has been taken directly from somebody more deserving.

That hostility does not emerge in a vacuum.

It grows in a culture where disabled people are repeatedly framed as costly, idle or suspect.

Language creates permission

Politicians may not directly tell people to abuse disabled citizens.

Newspapers may not explicitly encourage discrimination.

But repeated language creates a moral atmosphere.

When public figures speak as though disability benefits are easily obtained, they encourage the belief that claimants are probably dishonest.

When unemployment caused by illness is reduced to a failure of personal responsibility, people begin to assume that disabled people simply are not trying hard enough.

When rising disability figures are discussed without equal attention to NHS waiting lists, inaccessible workplaces, shortages in social care and unreliable transport, the public is given only half the story.

And half a story, repeated often enough, becomes prejudice.

Disabled people are being blamed for institutional failure

The demand is always placed on the disabled person.

Prove the condition.

Prove the limitation.

Prove that treatment has failed.

Prove that work is impossible.

Prove that the wheelchair is necessary.

Prove that the benefit is deserved.

Prove that the adjustment is reasonable.

Meanwhile, institutions are rarely asked to prove that they have made participation possible.

Has suitable treatment been provided?

Is transport reliably accessible?

Can the person enter the workplace?

Has the employer made meaningful adjustments?

Was social care available?

Did the employment-support scheme respond before the job disappeared?

Were disabled people protected from harassment and discrimination?

Too often, the answer is no.

Yet the disabled person remains the one treated as the problem.

This is where the diagnosis trend becomes more than irritating

Against that background, the transformation of disability into an online identity becomes particularly uncomfortable.

While some people are adopting diagnoses as symbols of belonging, others are fighting to have their medically established conditions believed.

While disability is turned into content, disabled people are waiting for treatment.

While diagnostic labels are displayed as badges, people with profound impairments are being accused of laziness, dependency or fraud.

The issue is not that anyone must hide their disability.

Nor is it that people should feel ashamed of a diagnosis.

The issue is proportion.

A condition can be acknowledged without becoming the whole identity.

Awareness can be encouraged without turning illness into social status.

Community can offer support without abandoning evidence, clinical accuracy or individual responsibility.

Advocacy should be measured by whether it improves disabled people’s lives, not merely by how prominently a diagnosis is displayed.

Equality requires more than visibility

Disabled people do not need endless awareness campaigns telling the public that we exist.

We need treatment.

We need accessible transport.

We need workplaces designed to include us.

We need employment support delivered while opportunities still exist.

We need fair pay.

We need benefits systems based on evidence rather than suspicion.

We need the law enforced when discrimination occurs.

We need political language that recognises both personal responsibility and institutional failure.

Most importantly, we need to be treated as complete people.

Not diagnoses.

Not inspirational stories.

Not financial liabilities.

Not political statistics.

And not convenient targets whenever public services fail.

I have lived with PTSD for more than three decades.

I live with fibromyalgia, FND and an acquired brain injury.

Those conditions shape almost every part of my life.

But they are not a community costume, a status symbol or an online identity.

They are realities I have had to understand, manage and adapt around.

I do not need society to celebrate my diagnoses.

I need society to stop placing barriers in front of the life I am still trying to live.

#Dustywentworth

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