Inclusiveness: And What Actually Matters

Inclusiveness has a definitional problem.

Most people will tell you what makes a place accessible by rattling off a list of things a building does or does not have. Those things are written down, inspected and published so that everyone can check them before leaving the house.

Now go find out if a hospital waiting room will be noisy on a Tuesday afternoon. Whether the lighting in the benefits office flickers. Whether the school hall will be full at pick-up time. There is no information anywhere like that. Not in the building code. Not on the venue website. Not in the reviews.

For a large number of people, that is the information that determines whether they can go.

The question people actually ask before leaving their house

This is rarely "can I get through the door?" It is more like: how loud will it be, how bright, how many people, can I predict what will happen once I am in it.

These are not choices. They are the difference between showing up for an appointment and needing to reschedule it for the fourth time.

An autistic community survey published in BMJ Open puts numbers on this. Of the 507 autistic adults surveyed, 80% said they found it hard to visit a GP, with the environment of the waiting room one of the highest rated barriers, cited by 51%. People said they felt uncomfortable at the doctor's office because of noise, crowds and bright lights. The same study recorded adverse outcomes such as unaddressed physical and mental health issues and missed screening appointments.

A waiting room is not a lifestyle option. It is the final twenty metres of accessing healthcare.

The pattern exists in other sectors as well. A National Autistic Society survey of more than 7,000 autistic people, family members and professionals found half said they sometimes or often do not go out, while 79% of autistic people said they felt socially isolated. Almost two thirds said they avoid going to shops, and shops were the places they most wanted to become autism friendly.

There are reviews. They measure the wrong things

There is plenty of public place information. There are photos, ratings, opening hours, menus and thousands of reviews. None of it answers the question posed above.

One of the parents we spoke to summed it up well:

"I've seen reviews that mention whether a restaurant is quiet or cosy, but I've never seen a single review specifically focused on intense sounds. Even when they mention noise, they don't think to mention that a 'quiet' cafe has a coffee grinder in nearly constant use."

Another interviewee described the same gap from the opposite side:

"There are not enough facts in reviews. People mostly write about the atmosphere, but I want to know facts about a venue: table spacing, lighting quality, noise levels."

Atmosphere is a feeling. Sensory conditions are facts. People get left in the lurch between the two.

And when the facts are not there, the onus is on the person who needs them:

"You either have to check a place out yourself, or find one of the few places with a detailed accessibility page. Most of the time, you just have to guess."

Guessing has a price. As one person told us, staying alert in an unfamiliar space uses energy that is not then available for the appointment, the errand or the conversation that was the reason for going in the first place.

Why this data was never collected

Not out of spite. Because no one was ever asked to collect it.

Measurement is the process that turns good intentions into infrastructure. Things that get measured end up in standards, in budgets, in maps and in law. Sensory conditions were never measured, so they never fed into any of those systems. They stayed personal, anecdotal and invisible, which is exactly how they still feel to the people managing them.

That is the honest position, and it is worth saying plainly: the data does not exist yet. It cannot be had by scraping what has already been published, because what has already been published does not contain it.

What inclusion requires

If access means being able to participate, then inclusiveness must cover the conditions that determine whether participation is possible. Which means:

• Understanding how a place sounds, not just how it looks
• Knowing the busy times of day and week
• Knowing before you get there, not after
• Specific information you can act on

That is what Jome is building. Sensory conditions for real places, collected from the people who actually notice them, so the decision can be made before leaving the house rather than discovered on arrival.

It starts with the places people do not get to pick. Clinics. Offices. Stations. Schools. The places where attendance is not optional.

Help us map it

Every report makes the next person's visit predictable. If you know a place well, tell us what it is like, whether that place works for you or not.

Share a spot at jome.app, or sign up to be notified when Jome opens in your city.

Inclusiveness that only measures what a building has is a partial answer. The rest of it is still unmeasured, and that is what we are working on.

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Sources

• Doherty M, et al. Barriers to healthcare and self-reported adverse outcomes for autistic adults: a cross-sectional study. BMJ Open 2022;12:e056904. Read the study
• National Autistic Society, Too Much Information survey of over 7,000 respondents, 2015. About the campaign
• Jome user research interviews, Netherlands. Quotes used with permission, names withheld.