When Disability Becomes Content: Who Gets to Tell the Truth?

I am not a disability creator.

I am a writer who happens to be disabled, lives with chronic illness and pain, and uses a wheelchair.

That distinction matters to me.

Disability informs much of my writing because it affects almost every area of my life. It influences how I travel, work, spend money, access public spaces and plan even the most ordinary day. But it is not the entirety of who I am, nor do I want everything I produce to be reduced to symptoms, seizures and suffering.

My blog allows me to explore the complexity that social media often strips away. It is now read in 47 countries across six continents. My articles have also been published elsewhere, including in The Male Psychology Magazine.

That is where I do the heavy lifting.

Social media is primarily how I publicise that writing. It also gives me a way to share shorter pieces of honest lived experience, particularly for people trying to understand a new diagnosis or adjust to wheelchair life.

Yet the longer I spend online, the more concerned I become about what disability and chronic illness are being turned into.

The truth does not always perform well

Some creators produce excellent disability content. They manage to educate, entertain and make difficult subjects accessible without sacrificing accuracy. That takes skill, and it is always good to see.

Others appear increasingly governed by what attracts views, followers and paid engagement.

Social media rewards drama, certainty and conflict. It does not naturally reward context.

A carefully worded explanation that something happened once, may have several possible causes and requires further investigation is unlikely to perform as well as:

“I have discovered a new seizure trigger.”

The second statement is stronger, more dramatic and easier to share.

It may also be completely unsupported.

Having a seizure near a barbecue does not establish that heat from barbecues is now a recognised trigger. It establishes that one person experienced a seizure while approaching a barbecue. Anything beyond that is speculation unless a repeatable pattern or credible medical explanation is established.

That distinction matters.

A personal experience is valid. A personal interpretation may be mistaken. Neither automatically becomes medical evidence simply because it has been turned into a video.

Lived experience is not a licence to misinform

I recently saw a series of posts claiming to explain what places someone at risk of developing Functional Neurological Disorder.

Some of the factors mentioned had legitimate associations with FND. Others were supported only by preliminary evidence. Several proposed mechanisms were little more than metaphors presented as established neuroscience.

Associations became causes.

Possible triggers became proven risk factors.

Hypotheses became facts.

“Nervous-system overload” was used as if it were a measurable diagnosis rather than an accessible but highly simplified way of describing something far more complex.

That content looked professional. It was easy to understand and probably shared widely.

It was also misleading.

This concerns me because I know what it feels like to receive a frightening diagnosis and search desperately for answers. I know how easy it is to believe something because it is presented confidently. I also know how harmful misinformation can become when it shapes how someone understands their condition, treatment and future.

When I write about FND, PTSD, Fibromyalgia or brain injury, I check medical and scientific sources and cross-reference important claims. I try to explain what is known, what remains uncertain and where my own experience fits within that evidence.

I do not always get everything perfect. No responsible writer should pretend otherwise.

But accuracy has to matter more than engagement.

Showing illness or performing it?

There is nothing inherently wrong with showing the difficult realities of disability.

Some people record seizures, medical procedures, hospital admissions and moments of profound vulnerability because they want others to understand. Such footage can educate and reduce stigma.

It is not for me.

When I am unwell, having a functional seizure or struggling with severe symptoms, I am not thinking about content. I am trying to remain safe and manage the situation as effectively as possible. I would rather explain what happened afterwards, once I can provide context.

That does not make my experience more genuine than anyone else’s.

However, it is reasonable to question content that is presented as spontaneous while being assembled from several carefully positioned cameras, tracking shots and professionally edited angles, particularly when the creator repeatedly emphasises living alone.

Questioning inconsistencies is not the same as declaring someone a fraud. We rarely know everything happening behind the camera.

But disability does not place content beyond scrutiny.

There is a difference between documenting an illness and constructing a performance around it. From the outside, that boundary is not always easy to locate. The ethical concern begins when presentation creates a distorted impression of what happened, how frequently it happens or what life with the condition usually looks like.

The danger of presenting only the worst moments

A great deal of disability content is centred on crisis.

Pain. Collapse. Medical trauma. Discrimination. Isolation. Benefits battles. Rage.

Those subjects are real and deserve attention. I write about many of them myself.

But when the most dramatic moments become the entire public picture, disability begins to look like one continuous emergency. Newly diagnosed people may conclude that their future contains nothing but deterioration, helplessness and loss.

The wider public also receives a distorted view. They may come to believe that “real” disability must always be visible, extreme and theatrical.

Then, when disabled people work, laugh, travel, have relationships, pursue interests or experience a good day, their condition is questioned.

This is why I prefer content grounded in recovery, adaptation and what remains possible.

That does not mean pretending everything is positive.

Recovery does not always mean cure. Progress can be slow, inconsistent and followed by setbacks. Some days my only achievement is getting through them.

Other days I write, spend time with my family, work on a project or find a way around a problem disability has placed in front of me.

Both realities are true.

My blog Brain Damage, Disability, and the Gifts It Gave Me did not present my brain injury as a blessing. It described memory loss, suicidality, lost sight, damaged hearing, vulnerability, wheelchair use and a fractured identity.

It also explained how writing became a lifeline, how my wife helped rebuild me and how purpose emerged from circumstances I would never have chosen.

That is not inspiration manufactured for an audience.

It is the complicated truth.

Disability is expensive in ways most people never see

The public debate around disability benefits rarely reflects the financial reality.

Scope’s disability-cost research has consistently found that disabled households need substantially more money to achieve the same standard of living as non-disabled households. Its 2024 analysis estimated average additional costs of £1,010 each month, even after accounting for disability benefits.

My own disability-related expenditure is £1,487 every month.

My PIP provides £778.40, leaving me to find £708.60 every month before paying for ordinary household expenditure.

Annually, that means:

• disability-related costs of £17,844
• PIP payments of £9,340.80
• an uncovered disability cost of £8,503.20

PIP is not spare spending money.

It does not make disability profitable.

It does not even cover the additional costs disability creates in my life.

The equipment nobody sees in full

People may see me using one wheelchair and assume that is my mobility need.

In reality, I rely on four different mobility devices:

• an indoor wheelchair costing £1,500
• a Scoozy S800 outdoor mobility scooter costing £6,000
• an active-user manual wheelchair costing £7,000
• a powerchair costing £12,000

That represents £26,500 in mobility equipment before insurance, servicing, repairs, batteries, tyres, cushions and eventual replacement.

These are not four versions of the same product.

My indoor chair is designed for manoeuvring around the house. My active chair provides practical everyday manual mobility. My powerchair allows independence when pain, weakness or fatigue prevent me from propelling myself. The Scoozy provides outdoor range and access over surfaces my wheelchairs cannot handle as effectively.

Most people receive all those forms of mobility from their body without ever needing to calculate the financial cost.

Then come the smaller expenses.

Wheelchair gloves cost £25 a pair. I wear out approximately four pairs a year. That is £100 annually simply to protect my hands while pushing my chair.

Specialist wheelchair cushions can cost several hundred pounds each. Different chairs and situations may require different cushions for pressure relief, posture, stability, pain management, temperature and moisture control.

That may not produce viral content, even with the assistance of #SummerHeat and #SweatyArse.

It may, however, help a new wheelchair user avoid pain, skin damage and an expensive purchasing mistake.

That has more value to me than a million empty views.

Motability is not a free car

One of the most persistent myths is that disabled people receive free cars.

The Motability Scheme allows eligible people to use their qualifying mobility allowance to lease a vehicle, scooter, powered wheelchair or wheelchair-accessible vehicle. Payments are taken directly from the allowance, and some vehicles also require an advance payment. Insurance, servicing, maintenance and breakdown cover are included, but customers generally do not own the vehicle at the end of the lease.

That is not free.

For many people, the scheme provides essential access to a reliable vehicle when mainstream finance is unavailable. It may offer particularly good value to someone needing an extensively adapted or wheelchair-accessible vehicle.

But it is not automatically the cheapest option for everyone.

I qualify for a Motability car but do not have one because I cannot afford to surrender my full mobility payment to a vehicle.

My used ex-demonstrator costs £157 a month in finance. I pay a further £25 for breakdown and repair cover and £34 for insurance, giving me a monthly total of £216. I receive vehicle-tax exemption through PIP.

Because my military pension helped me obtain finance, that arrangement works better for me.

Many people relying solely on benefits will not have that option. For them, Motability may be the only realistic route to dependable transport.

But a car is only one part of mobility. I must still insure, maintain and repair four other mobility devices.

The “free car” accusation survives because it is simpler than the truth.

Public transport is not equally available

Disabled people are often criticised for needing cars by those who have never had to consider whether they can board a bus, leave a railway station or receive the assistance they booked.

Wheelchair spaces on buses exist because a wheelchair user cannot simply sit elsewhere. Government guidance reflects the Supreme Court’s finding that drivers must do more than merely ask other passengers to vacate the designated space.

Yet wheelchair users are still prevented from boarding when spaces are occupied by unfolded pushchairs, luggage or passengers unwilling to move.

Train travel can require planning assistance in advance, checking which stations have lifts and ensuring there is a step-free route from the platform to the street.

Even then, support is not guaranteed.

Transport Focus found that only 76% of disabled passengers surveyed received every element of the rail assistance they had booked during 2023/24. Twelve per cent received none of it. Sixty-one per cent said they could not have completed their journey without assistance.

Missing assistance is not a minor inconvenience when you cannot independently leave the train.

It can mean being carried beyond your destination, stranded on a platform or prevented from travelling at all.

A car may therefore be less a luxury than protection from an unreliable system.

Working does not guarantee equality

Disabled people are frequently described as a financial burden, yet less attention is given to the barriers preventing them from working or being paid equally when they do.

The UK disability pay gap was 12.7% in 2023. Disabled employees earned a median £13.69 an hour, compared with £15.69 for non-disabled employees. The gap had remained broadly stable for almost a decade.

That is not simply a story about individuals being unable to work.

It is also about inaccessible workplaces, assumptions about competence, inflexible practices, limited progression and employers who still treat reasonable adjustments as favours rather than legal duties.

Disabled people are told to contribute, then encounter systems that make contribution unnecessarily difficult.

They are criticised when unable to work and undervalued when they do.

Rights that depend on your ability to fight

The Equality Act 2010 gives disabled people important legal protections. It prohibits discrimination and creates duties to make reasonable adjustments.

But rights written into legislation do not enforce themselves.

Parliamentary committees have repeatedly found that enforcement relies heavily on individuals bringing legal action. They have identified poor awareness of rights, complex law, limited specialist support, legal costs and restricted access to legal aid as barriers to justice.

This creates a bitter contradiction.

The disabled person expected to enforce the law may already be managing chronic pain, fatigue, cognitive impairment, reduced income, inaccessible communication and dependence on the organisation being challenged.

The people most in need of protection may be the least able to endure the process required to obtain it.

A law that depends upon an individual possessing enough health, money, knowledge and stamina to fight is not providing equal protection.

It is offering protection to those who can afford to enforce it.

Fraud exists, but so does missing support

Benefits fraud exists. Denying that would be dishonest.

Some online material may encourage people to manipulate applications, rehearse particular language or present their circumstances misleadingly. That should be challenged.

But fraud must be discussed proportionately.

Official estimates for the financial year ending 2026 placed PIP overpayments attributed to fraud at 1.4% of expenditure. During the same period, the Government estimated that 3.3% of PIP expenditure, £950 million, represented unfulfilled eligibility, meaning claimants were receiving less than their circumstances suggested they should. Around ten in every hundred PIP claims had some degree of unfulfilled eligibility.

That does not make fraud insignificant.

It does expose how distorted the public conversation has become.

We hear endlessly about those supposedly receiving too much. We hear far less about disabled people receiving too little.

The language has consequences

Politicians and newspapers have increasingly discussed disabled people through the language of cost, economic inactivity, suspected fraud and unsustainable welfare expenditure.

Policy deserves scrutiny. Benefits systems should be accurate and accountable.

But there is a profound difference between examining a system and encouraging suspicion towards everyone who depends upon it.

Social media then takes that language, removes what little context remained and intensifies it.

“Claimant” becomes “scrounger”.

“Mobility support” becomes “free car”.

A fluctuating condition becomes proof someone is faking.

A good day becomes evidence that the bad days were invented.

Online hostility does not always remain online.

Police recorded 10,224 disability hate crimes in England and Wales during the year ending March 2025. That figure had fallen by 8% from the previous year, but it still represents more than ten thousand recorded offences.

The true scale is likely to be considerably greater. A recent government evidence review found that disability-related offences represented about one-third of hate crimes estimated through the Crime Survey, but only 8% of police-recorded hate crime. The review also described mistrust, poor official responses and fear as reasons people may not report what happened.

I have personally been verbally abused on several occasions.

The individuals involved discovered that the disabled man they had chosen was not easily intimidated. Learning that I was a military veteran, and that service-related injuries contributed to why I was sitting in a wheelchair, caused a very public change in attitude.

I will admit that watching their embarrassment and discomfort was entertaining.

But it also exposed something deeply wrong.

My service sometimes places me in a category some people consider more deserving. I am suddenly no longer simply a disabled man. I am a veteran.

I do not consider myself more deserving than anyone else.

A person disabled from birth, through illness, through an accident or for reasons invisible to a stranger deserves precisely the same dignity.

Nobody should need a military record before abuse becomes shameful.

I could confront those individuals. Many disabled people cannot, or reasonably fear that doing so could escalate the danger.

For them, these encounters are not amusing.

They are frightening, degrading and completely unacceptable.

Creators carry responsibility too

Politicians, mainstream media and abusive keyboard warriors must all shoulder responsibility for the climate surrounding disability.

Some disabled and chronically ill creators also need to consider their part in shaping public perceptions.

When content consistently focuses on dramatic symptoms, presents isolated incidents as medical facts or creates a misleading picture of everyday disability because it performs well, it provides material for those already eager to question us.

That does not mean suspicious content proves someone is faking.

Nor does it mean disabled people should sanitise their lives to satisfy hostile audiences.

It means creators should be honest about what they are showing.

Say when something is a personal experience.

Say when an explanation is only a possibility.

Say when research is preliminary.

Acknowledge that one person’s disability does not represent every person with the same diagnosis.

Monetisation itself is not immoral. Creating valuable content is work, and people are entitled to be paid for it.

The problem begins when suffering becomes a product and accuracy becomes an inconvenience.

Why balanced voices must continue

Balanced disability content rarely receives the greatest reach.

A post about increased electricity, gas and water use may be genuinely educational, particularly for someone trying to understand why disability has made their household bills rise.

A post explaining the purpose and cost of several wheelchair cushions may help someone new to wheelchair life.

A detailed account of passenger assistance failures may show an able-bodied reader why “just take the train” is not a simple solution.

None is likely to compete with dramatic footage, outrage or rage bait.

That does not make it pointless.

The House of Commons Library estimates that 16.8 million people in the UK were disabled in 2023/24, representing one quarter of the population.

We are not a tiny minority at the edge of society.

Yet our lives are still frequently described by politicians, interpreted by journalists, assessed by officials and judged by strangers who have never lived them.

That is why more disabled people and people with chronic illness should tell their own stories, where they feel able to do so.

Not only the pain.

Not only the triumphs.

Not only what performs.

The difficult days and the good ones. The inaccessible building and the successful day out. The frustration of equipment failure and the independence that equipment provides. The financial cost and the value of the support that makes life possible.

Honesty does not mean forced positivity.

It means refusing to present disability as either endless tragedy or effortless inspiration.

People who are not seen are easy to ignore

Social media will never replace strong legislation, properly funded support, accessible public services or effective enforcement of disabled people’s rights.

It cannot repair a broken lift, make an employer behave lawfully or guarantee that assistance will arrive at a railway station.

But it can make hidden realities visible.

It can challenge the “free car” myth.

It can show why one wheelchair is not enough.

It can explain why PIP is not spare income.

It can help someone newly diagnosed separate evidence from speculation.

It can remind the public that disabled people are not statistics, burdens or political problems to be solved.

We are workers, parents, partners, writers, neighbours and members of society.

Some of us are struggling.

Some are rebuilding.

Most are doing both.

The truth may not always trend. It may not attract the largest audience or generate the greatest income.

But people who are neither seen nor heard are easy to dismiss.

So I will continue writing.

I will continue showing what disability costs, what society gets wrong and what remains possible.

Not because I can police everything published online.

More’s the pity.

But because every honest voice makes it slightly harder for others to speak about us without challenge.

#Dustywentworth

My Website