We see the phrase everywhere now.; ‘Not every disability is visible!‘ It appears on posters, social media graphics, accessibility campaigns and lanyards. It is repeated by businesses, organisations and public services as evidence that our understanding of disability has moved forward.
But increasingly, I find myself wondering whether we actually believe it. Because there is an enormous difference between saying that not every disability is visible and behaving as though that is true. Over the past year, I have become much more aware of that difference.
I have ADHD, sensory processing difficulties and dyspraxia. As I have entered perimenopause, my ADHD symptoms have become significantly more difficult to manage. Things I could previously compensate for, mask or simply force myself through have become harder.
And that has exposed something uncomfortable.
Accessibility is still too often built around the idea that a disabled person should look disabled.
If we don’t, we are expected to explain ourselves. To justify ourselves. To provide evidence. And sometimes, even when evidence exists, there remains an underlying suspicion that perhaps we could manage if we just tried a little harder.
When an accommodation requires repeated disclosure
I experienced this particularly starkly during a trip to Disney World.
Before travelling, I applied for disability accommodations for myself. I had evidence of my disabilities and explained why conventional queues create a significant barrier for me.
I wasn’t given the particular accommodation I had applied for. Instead, I was told that other reasonable accommodations were available.
And for the most part, those accommodations worked.
But there was a considerable problem with the way I had to access them.
At every single attraction where I needed a return time, I had to explain my disability again.
adhd girl
Not simply say that I required an accommodation. Not show something demonstrating that my need had already been established. I had to explain my disability to a different member of staff, at a different attraction, every single time. Think about what that actually asks of a disabled person.
I had already gone through Disney’s disability-access process. Yet once I was inside the park, accessing the alternative offered to me meant repeatedly disclosing personal information about my disability throughout the day.
Ride. Explain.
Next ride. Explain again.
Next ride. Explain again.
There is something deeply uncomfortable about an accessibility system that requires a disabled person to repeatedly disclose their disability in order to participate in the same experiences everybody else can simply queue for.
And when you already spend so much of your life having to explain why you struggle with things other people can do without thinking, it is exhausting.
I completely understand that companies need to protect accessibility systems from misuse. If Disney believes too many people are accessing a particular accommodation when they don’t genuinely require it, then address that problem.
Why not have a robust, evidence-based system that establishes somebody’s needs?
Provide the evidence. Establish eligibility. Record the accommodation somebody requires. Then allow that person to enjoy their holiday without having to recount their disability to staff at every attraction they want to experience.
Surely that protects the system *and* preserves the dignity of the disabled person.
Instead, the system I experienced placed the burden back onto me again and again.
When accessibility means splitting up a family
There is another problem with some of the alternatives offered to disabled guests.
Where another adult is available, an alternative can involve that person physically queuing while the disabled guest waits elsewhere.
On paper, that might sound reasonable.
But families affected by disability don’t necessarily have one neat, isolated accessibility need.
If a family includes a child with additional needs, that can mean splitting the family up. One adult spends part of the family holiday standing in a queue while the other waits elsewhere caring for the child who requires additional support.
Rather than making it easier for that family to experience the attraction together, the solution can effectively become separating them in order to work around the barrier.
And this is where I think we need to have a wider conversation about what accessibility actually means.
I completely understand the argument that disability accommodations can be misused. Nobody wants a system designed to help disabled people becoming so overwhelmed that it no longer functions.
But surely the answer is not simply to make accessing accommodations more burdensome for the people who genuinely need them.
Use evidence.
Have an appropriate assessment process.
Establish somebody’s needs.
Then allow them to get on with their holiday.
Other attractions have introduced evidence-based access systems. Whatever the merits or problems of individual schemes, there is at least a fundamental principle there that makes sense to me: establish eligibility through a process rather than repeatedly asking a disabled person to explain their condition throughout their visit.
For a company so closely associated with family experiences and inclusion, I think it is entirely reasonable to ask whether a system that can require repeated disclosure or splitting families up is really the best we can do.
Because there is a dignity issue here as well as an accessibility one.
Anna, Elsa and a permanent barrier
That became particularly apparent when one of my children wanted to meet Anna and Elsa.
This wasn’t a temporary character appearance.
It wasn’t a character wandering around the park where accommodating a queue might genuinely present logistical difficulties.
Anna and Elsa were in a permanent indoor meet-and-greet location with an established physical queuing system.
The queue was around 40 minutes.
I couldn’t manage it.
I did exactly what staff had advised me to do. I kept checking throughout the day in the hope that the queue would become shorter and reach a point at which I could manage it.
It didn’t.
Eventually, I went to Guest Relations because we’d reached a ridiculous situation.
My child was potentially going to miss an experience because their parent was disabled.
I wasn’t asking to walk straight to the front.
I wasn’t asking to meet Anna and Elsa without waiting.
I was perfectly happy to wait the equivalent amount of time somewhere I could manage.
I was asking why there wasn’t an accessible way for me to use a permanent attraction with a permanent physical queue.
That’s a very different thing.
If an attraction exists permanently, indoors, with a physical queue specifically designed to manage guests, accessibility should already be part of that design.
It shouldn’t need to be improvised when somebody with an invisible disability turns up.
And this is where the distinction between equal treatment and equal access matters.
Saying, “Everybody has to queue,” treats everybody identically.
But if one person cannot use that queue because of their disability, identical treatment has resulted in unequal access.
My disability doesn’t disappear because the rules are the same for everybody.
And in that situation, the consequences didn’t only affect me.
They affected my child.
The message, however unintentionally, becomes: *because your parent is disabled, there are some experiences your family might simply have to miss.*
For an organisation built around families experiencing things together, I think we should be allowed to question whether that is good enough.
Twelve years of being dismissed
And this attitude doesn’t only exist in theme parks.
I’ve experienced another version of it in healthcare.
For around twelve years, I have repeatedly raised problems with pain in my calves and the way that I walk.
I have dyspraxia.
My gait has always been different. Walking requires more effort for me than it seems to require for other people, and for years I have tried to explain that something wasn’t right.
Yet for years, I felt dismissed.
When somebody can physically see you standing and walking, there can be an assumption that you are therefore capable of doing those things without significant difficulty.
But “can walk” and “can walk without pain, difficulty or disproportionate effort” are not the same statement.
Eventually, after years of living with the problem, I was referred onwards for further investigation.
Twelve years is a long time to keep saying, **something isn’t right**, while feeling as though the people you’re asking for help don’t quite believe you.
And again, the problem comes back to visibility.
I don’t necessarily look like somebody who struggles to walk.
So people see me walking.
They don’t see the effort.
They don’t see the pain afterwards.
They don’t see the adaptations.
They don’t see the way I have spent years compensating for the way my body moves.
They see the outcome and assume the process must be easy.
Sometimes being capable works against you
ADHD GIRL
This is one of the strangest things about living with an invisible disability.
Many of us become very good at compensating.
We mask.
We adapt.
We find alternative ways of doing things.
We plan ahead.
We avoid environments we know will cause problems.
We develop coping mechanisms that allow us to participate in a world that often wasn’t designed around us.
And then, perversely, our success at doing those things can become evidence against us.
You’ve managed before, so why can’t you manage now?
You walked in here, so how bad can walking really be?
You queued there, so why can’t you queue here?
You travelled to Disney World, so surely you can stand in a queue.
You work.
You parent.
You socialise.
You travel.
Therefore, surely, you can’t be *that* disabled.
But disability doesn’t work like that.
Ability is not binary.
Being able to do something does not mean being able to do it indefinitely, repeatedly or without consequences.
And somebody shouldn’t have to push themselves until their disability becomes visibly obvious before other people believe that it exists.
Disability isn’t an ideology
This is the part I think we still haven’t grasped.
‘Not every disability is visible’ cannot simply be an ideology we publicly endorse. It has to change how we respond to people.
If we genuinely accept that disability can be invisible, we also have to accept that sometimes we won’t be able to see why somebody needs an adjustment.
We have to accept that somebody’s ability to do something once doesn’t prove that they can do it repeatedly.
We have to accept that a person may appear completely fine while using an enormous amount of physical or mental energy to remain that way.
We have to accept that somebody can be capable in one environment and disabled by another.
And, perhaps most importantly, we have to stop treating disabled people as inherently unreliable narrators of their own bodies and minds.
That doesn’t mean nobody should ever be asked for evidence.
In fact, I think an evidence-based system can be far more dignified than repeatedly asking somebody to explain themselves.
Establish the need.
Verify it appropriately.
Put the adjustment in place.
Then allow the person to get on with their day.
There is a difference between having a sensible process for establishing eligibility and making somebody repeatedly defend the existence of their disability.
One protects an accessibility system from misuse.
The other risks making disabled people feel as though they themselves are under suspicion.
When organisations tell us that not every disability is visible, that statement has consequences.
It means accepting that you won’t necessarily be able to look at me and understand why I cannot stand in a conventional queue.
It means accepting that I shouldn’t have to make my disability visible through repeated disclosure before I can be accommodated.
**If your accessibility system only works after I explain my disability at every single attraction, then my invisible disability hasn’t really been accommodated. I’ve simply been given the responsibility of making it visible over and over again.**
What happens if you can’t fight?
And this is the part that troubles me most.
I can advocate for myself.
I can explain what I need.
I can challenge somebody when I think I’m being dismissed.
I can write emails.
I can make complaints.
I can research policies.
I can ask difficult questions.
And if somebody tells me no and I genuinely believe that decision is wrong, I am capable of asking them to justify it.
Even with those skills, I have spent around twelve years trying to get a problem with walking properly investigated.
Even with those skills, I have found myself on a family holiday repeatedly explaining my disability at individual attractions so that I could access the alternative accommodation I’d already been told was available.
Even with those skills, I ended up at Guest Relations trying to explain why a permanent attraction with a permanent queue needed an accessible alternative.
So I keep coming back to one question.
What happens to the person who cannot advocate for themselves like I can?
What happens to somebody whose disability itself makes communication difficult?
What happens to somebody who becomes overwhelmed in confrontational situations?
What happens to somebody who doesn’t know their rights?
What happens to somebody who assumes that because a professional or a large organisation has said no, there is nothing more they can do?
What happens to the person who has been dismissed so many times that eventually they stop asking?
I genuinely hate to think where I would be in life if I weren’t able to advocate for myself.
Because I feel that I would have been dismissed.
Looked over.
Written off.
Treated as though my difficulties weren’t significant enough to justify somebody else’s time or effort.
And nobody’s quality of life should depend on how articulate, persistent or determined they are capable of being.
That is the bottom line.
We have become very good at saying that not every disability is visible.
A company can talk about inclusion while operating an accessibility system that leaves disabled guests repeatedly explaining their disabilities.
A healthcare system can acknowledge neurodevelopmental disabilities while somebody spends years trying to convince professionals that the physical difficulties they experience are real.
An organisation can display every accessibility slogan available and still create processes that only work smoothly for people whose disabilities fit neatly inside its system.
None of that requires somebody to wake up in the morning and decide to discriminate. Discrimination does not have to be deliberate to have an impact. If we genuinely believe that not every disability is visible, we have to build systems around that reality.
Listen when somebody says there is a barrier.
Use evidence where evidence is reasonably required.
Design accommodations around the people who actually need to use them.
Remember that dignity is part of accessibility too.
And stop making disabled people demonstrate their difficulties over and over again before we decide they are deserving of support.
Accessibility cannot depend on how good a disabled person is at fighting for it.
Until it doesn’t, ‘not every disability is visible’ risks remaining something we say rather than something we practice.
If you feel the same I encourage you to sing our petiton that encourages the UK Government to ensure that all public sector service employees must have mandatory training on how to accomodate people with non-visible disabilities here:- https://petition.parliament.uk/petitions/770883
