aPhoto by Jirasin Yossri on Unsplash

As my autism diagnosis happened in the thick of Covid border closures, I haven’t done a lot of air travel as a knowingly Autistic person. Now that the world is opening up again, I’m itching to get out there. But I’m also thinking about how to make my travel autism-friendly.

As an Autistic person going through an airport, wearing a sunflower lanyard is the perfect solution, right? Well I’ve thought about it and for many reasons, I don’t think I’ll be packing it along with my noise-cancelling head phones.

The sunflower lanyard is an initiative of an organisation called Hidden Disabilities. It was launched in 2016 in the UK as a “discreet” way for a person to signal to businesses and organisations that they might need extra time, help or understanding because they have a condition such as autism, dementia or anxiety that is not immediately apparent. It started as a way to help people navigate their way through busy airports and has since spread to other settings including retail.

Image of a Sunflower Lanyard from Hidden Disabilities

While there was initially some limit on who could get a sunflower lanyard, cheap rip-offs flooded the market so anyone could get one and use it for any purpose.

What other purpose could these things possibly have?

Well, the lanyards were in the news a while back amid allegations that people were taking advantage of them in order to evade Covid prevention mask mandates. There’s plenty to unpack here and I’m not going to pretend I know how this is even possible. The upshot of it is that Autistic people and others who wore them for their intended purpose became the targets of suspicion, even when wearing a mask.

The sunflower lanyard is just a symbol and symbols can be imbued with whatever meaning people want to give them. For this reason, we need to be cautious about relying too much on a bit of floral plastic and cord as a panacea for ableist environments.

I want to like it. I want to be happy for the people who find reassurance and confidence in it. I can see why it’s been embraced by parents of Autistic children sick of people making assumptions about their parenting when their child has an inevitable meltdown in an airport queue.

I just can’t see how it would help me.

A couple of years ago, I was coming through an airport in Regional Australia that happened to be trialing a set of new security screening measures. Unencumbered by carry-on luggage and metallic objects, I sauntered through the scanning unfazed. But just as I grabbed my phone from the plastic tray, I was pulled aside and told to raise my arms. I had to tell them three times that I couldn’t raise my left arm because I had recently had a shoulder replacement. If only I’d worn my sling.

I was then herded over to a woman who without introduction started pressing her fingers on my shoulders and upper chest despite me (again) mentioning my recent surgery and visibly flinching as she pressed on the fresh scar. When she finished prodding my torso she moved to the back of my head and started pressing there. For context, my hair was about 1cm long in that area so there’s no way I was harbouring anything. She asked me if I was wearing hair gel which I found bizarre and irrelevant.

At no stage did she explain what she was doing let alone ask my permission to do it. I don’t like being touched by strangers at the best of times and this was off the chart. I was so stunned by this sequence of events I could barely speak by the end of it.

A staff member who had been looking on told me I should have advised them about the surgery before my flight. Funnily enough, it hadn’t occurred to me that I would be going through something resembling prison intake as I went through a regional airport. When I checked the airport and airline websites afterwards there was no mention of new security measures.

I didn’t experience this level of bodily invasiveness when I was travelling in the US post September 11 2001.This time, there had been no precipitating event. I expected the usual Covid screening which we had all become accustomed to but this was something else.

I still have all the details of this incident because I put them in a letter to the airport manager. Afraid I’d be fobbed off with a standard line about the importance of security measures, I mounted a pre-emptive strike, stating that I fully understood the importance of security screening measures.

What’s more, I am an experienced traveller and familiar with security screening measures not just in airports but the court system that I have worked within. I love rules and the order that they bestow on us and I make an effort to comply with them, especially when they exist to protect our health and safety. BUT, I countered, I can’t support the abuse or misguided application of those rules. Nor can I support actions that go beyond what is reasonably required and questioning actions that made me feel violated does not equal being uncooperative.

I received a response from the manager within days, letting me know that he had commenced an investigation of what had happened at the screening point on that date and would be in touch. He apologised, saying, “customer service is a large part of the screening process and we need to understand why there was a break down at this time.”

True to his word, he got back to me a few days later and explained:

“It appears we have experienced an issue where the use of brand new equipment combined with new staff resulted in a breakdown in our procedures and customer-centred focus.”

“We have reviewed our procedures to make sure that the question of any injuries comes up earlier. Thank you for your feedback on this, we cannot improve without it. I hope with the changes you have instigated, the issues will not occur again”.

To me this felt like a win. The changes you have instigated. Wow! Little old me complaining can actually achieve something.Someone had listened, taken on board my experience and changed their processes as a result. Sometimes it’s worth saving your energy to target those who have the power to change. Not everyone is able to do this, but I can, so I should.

It’s unfortunate that this is the way that it happened but it highlights the importance of centering human experience in the design of processes. I’ve no doubt the failure of the process impacted me more because of my atypical sensory processing. But I didn’t even need to mention to the manager I was Autistic because the experience would have been grossly awful for anyone.

Would a sunflower lanyard around my neck have helped me?

I very much doubt it. It probably would have just caused more problems. It may have been yanked over my head lest it interfere with the feverish head and neck prodding. She would have asked me to explain what it was just as the power of speech was failing me. I was already the centre of attention and this would have elevated me to curiosity status. It would have made me feel even more infantalised and disempowered that I already did.

Popping on a sunflower lanyard raises expectations that someone will be there to help but it doesn’t guarantee it. There’s every chance that even if staff are trained to recognise it, they have a superficial understanding of its purpose and misconceptions about the lived experience of Autistic people — not just among staff but anyone I may be in contact with. I have no way of knowing what each random person’s understanding is and that makes me feel very exposed.

I feel that if I place a sunflower lanyard around my neck I am conceding that I’m the problem and relying on the good grace of folks to tolerate me. There’s an underlying assumption that the way things are done is otherwise okay but we can stretch to favours for people who are a bit special.

The folks from Gatwick Airport in the UK who initiated the Lanyard scheme gave the following examples of additional support that might be required by people with invisible disabilities:

• receiving clear instructions
• ability to remain with family members at all times
• assistance with reading departure boards or signs
• more time at check in and security

If receiving clear instructions is a special accommodation that has to be sought out, we’re all in trouble. Assuming that processes work just fine unless you have a disability, is just ableist and it takes the focus off what is wrong with those processes. If there are barriers to navigating an airport, best to look closely at they are and what needs to be done to eliminate them.

Airports are inherently chaotic places — it only takes a storm to throw things into disarray. But there are many ways in which airport environments and processes can be designed in a way that works for everyone — better layouts, clearer and more abundant signage, timely communication of changes and making information about processes available online and in onsite in written and visual formats. The onus shouldn’t be on individual employees to take the hit for the flawed systems they’re working within.

The legal concept of the eggshell skull holds that a person needs to anticipate not just the impact of their (negligent) actions on the “reasonable person” but on those with unseen vulnerabilities. It’s not enough to say that processes are sound because most people can tolerate them. The people most affected are in the best position to identify the gaps and weaknesses and contribute to better processes for everyone.

Needing help should be normalised, in customer service environments, not seen as a special favour. One of the best examples I’ve seen of this is the volunteers at the annual Sydney Writers Festival. They want to be there and they’re passionate about sharing it with others. They take it as a given that people will need help navigating an unfamiliar environment and they‘re even on the alert for anyone needing it. Rather than being caught off guard by someone expressing their needs, they anticipate them. A confused look and hesitation in my step were all that it took for a volunteer to approach me guide me in the most gentle and unobtrusive way.