Sara Stacey is a 40‑year‑old woman with muscular dystrophy — specifically, Rigid Spine Syndrome, a progressive condition that weakens muscles, restricts breathing, and limits mobility.
She is a full‑time powered wheelchair user. She has driven since she was 16, using adapted vehicles to maintain the independence that her condition tries to take from her.
And now, because of systemic delays, inaccessible assessments, and bureaucratic rigidity, she cannot leave her home without her mum.
Not because she is incapable. Because the system failed her.
Motability says they extended the lease on Sara’s existing vehicle “to help her remain mobile”. But she cannot drive that vehicle. Her condition has progressed to the point that she can no longer transfer into the driver’s seat. The van is physically unusable for her.
So the extension is not mobility. It is paperwork.
It allows Motability to say she still has a vehicle. It does not allow Sara to actually use it.
Sara Stacey has missed family gatherings, career opportunities and time with her husband, is largely confined to an apartment she cannot fully access, and suffered the most painful consequence of her lost mobility when she was unable to say goodbye to her dying cat because no wheelchair‑accessible transport was available.
Sara said she feels like her life is on hold, and that she doesn’t care whether the van is pre‑owned or bright yellow — she just wants to drive again, go out with her husband, and see her family.
With more than 35,000 Motability customers relying on wheelchair‑accessible vehicles, Sara’s experience shows the devastating personal cost when that lifeline disappears.
Sara, a Diversity and Inclusion Officer, said her challenges extend far beyond securing an adapted vehicle — the lack of access to restaurants and other venues means she is excluded from everyday experiences that able‑bodied people take for granted.
Sara said she lives right by Wickford High Street, yet she still can’t get into the local Indian or Chinese restaurants because they all have steps and no wheelchair ramps, leaving her unable to go anywhere nearby and forcing her to be driven out of her own community to places like Rayleigh or Chelmsford instead.
Accessibility sits at the heart of the social model of disability, which argues that people are disabled not by their bodies but by the barriers society chooses to build and maintain.
Sara’s experience makes that truth unmistakable: steps at restaurants, a lack of ramps, limited wheelchair‑accessible transport and poor awareness all combine to restrict her independence far more than her condition ever could.
When public spaces, services and infrastructure exclude disabled people, the result is not inconvenience but isolation — a preventable, man‑made limitation that denies individuals the ability to participate fully in their own communities.
For many disabled people, accessing an adapted vehicle is far more than a convenience — it is the infrastructure that underpins secure employment, regular healthcare, social connection and the basic ability to live independently.
Research from the National Centre for Accessible Transport shows that two‑thirds of disabled people use a car or wheelchair‑accessible vehicle at least once a week, underscoring how essential these vehicles are to everyday life rather than optional extras. When that access is disrupted, the consequences are immediate and severe: work becomes precarious, medical appointments become harder to reach, social lives shrink, and independence collapses. This is why adapted vehicles are not simply transport — they are a lifeline.
Accessibility is central to the social model of disability, which makes clear that people are disabled not by their conditions but by the barriers society chooses to build and tolerate.
Sara’s experience shows how those barriers operate in real life: steps at restaurants that block entry, a lack of ramps, limited wheelchair‑accessible transport and public services designed around able‑bodied assumptions all combine to restrict her independence far more than muscular dystrophy ever could. Under the social model, her exclusion is not inevitable — it is the result of avoidable design choices that deny disabled people equal access to their communities, their relationships and their everyday freedoms.
When Sara slipped on ice in December 2017, the accident sharply accelerated her loss of mobility, and her worsening spinal pain meant she could no longer safely transfer from her wheelchair into the driver’s seat; what should have been a straightforward renewal to adapt her vehicle to her new needs instead became a process dragging on for well over a year, stripping away the independence she had relied on for decades.
The emotional toll of being without a vehicle has strained Sara’s relationships and left her housebound at times when she should have been spending meaningful time with her family; most painfully, she missed the chance to say goodbye to her beloved cat because she had no way of getting to the vet, a moment that cannot be undone.
Sara said it has significantly affected her relationship with her husband because they no longer go out as they once did; when she had her van, they spent their time at concerts, visiting family and enjoying life together, but now they hardly go out at all. She added that she lives in an apartment with a balcony she cannot access because of a step, leaving her spending most of her day indoors and increasingly isolated.
Sara said that she and her husband recently had to make the very difficult decision to put their cat to sleep due to liver issues, and because she did not have her wheelchair‑accessible vehicle and her mum was at work, her husband had to go to the vet alone; with no wheelchair‑accessible taxis available either, she was unable to be there in her cat’s final moments, a loss that speaks to the profound human cost of inaccessible transport.
Alongside the delays, Sara faced the high additional costs that many disabled people shoulder even when they do have a vehicle; accessibility barriers meant she routinely had to pay more for essential travel, specialist adaptations and basic mobility needs – financial pressures that non‑disabled people simply do not encounter.
Sara explained that because her wheelchair ramp is at the rear of her vehicle, she has often been unable to use on‑street parking, including double yellow lines, as she needs clear space behind the van to deploy the ramp safely. She described an incident near Carnaby Street where she parked in a disabled bay before going to the theatre; despite a red‑route “no parking” sign directly behind the bay — and despite the rest of the street being empty — someone still parked immediately behind her van, leaving her completely unable to get back into her vehicle.
Sara said that since that incident, she no longer risks relying on on‑street parking and instead has to pay for venue parking or hire private spaces. She explained that parking for a recent Boyzone concert at Arsenal cost her £50, and she has faced similar charges at venues like Hammersmith Apollo and even when attending hospital appointments in London — costs she would not incur if basic parking infrastructure were accessible to wheelchair users.
Looking ahead, Sara said she simply wants her independence back. She explained that she and her husband have a long list of things they want to do, and they keep saying that as soon as she gets her vehicle, they will finally be able to start doing the ordinary things that make a life — going out together, getting a year’s pass for the local gardens, going to the cinema, travelling into London. All of it remains on hold until she has the basic mobility that most people can take for granted.
Many people say that what Sara is describing isn’t an inconvenience but a failure of basic infrastructure — that no one should lose their independence, their social life or the ability to be present for family because accessible transport is treated as optional rather than essential.
For disabled people, these things are not luxuries or conveniences; they are a lifeline — the difference between isolation and participation, between being able to live a full life and being shut out of it.