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kiragecko · 5 months

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A few weeks ago, I flew to visit my grandma with my little brother and sister. My little brother had never been on a plane, and my sister only has once, almost a decade ago. It was an experience.

All three of us are in our 30s and neurodivergent¹. My little brother has Down’s Syndrome² and is probably autistic. He communicates mostly through echolalia³.

I suspected there might be challenges, so I tried to contact the airline before purchasing tickets. This did NOT work. The Westjet agents weren’t allowed to discuss anything with me until I had booked a flight. I was purchasing nonrefundable tickets. The website was quite clear that they could kick us from the plane if they couldn’t support our needs. And they wouldn’t tell me if they could support our needs!

I ended up calling around 8 times. Finally, after purchasing tickets and jumping through all the hoops, someone was willing to talk. They mostly said that everything was up to the people letting us on to the flight, but at least they talked to me!

My main concern was the pacing. My brother’s favourite activity is pacing in circles and repeating movie/song quotes to himself. Once we got on the plane things would be fine (we had movies for him to watch), but I was concerned that other passengers waiting to board would find this stressful. Like - that isn’t our problem, it’s their’s - but flying is hard! If there was a way for us to not add more stress, I wanted to find it!

The airline was zero help, so we did our best to prepare on our own. My uncle died the day before the trip, and that increased stress levels. My autistic sister was dealing with that, a sense of responsibility for my brother, and also anxiety about a mostly-new experience (flying).

And then the plane gets delayed.

By an hour, at first.

The airline said we should be there TWO HOURS early for domestic flights. Which is ridiculous. TWO HOURS??? Especially since everything before security can now be done online? But we obediently turn up two hours before the new flight time, and are immediately directed to the priority security line. Which is good. Even the short line is boring for my brother, and I can’t let him pace in the few open spaces. But ten minutes later we’re at our gate, ready to leave.

Now we just have to wait for an hour and fifty minutes!

We had hoped my brother would want to watch his first movie. But he's riled up from lines and crowds and gets right to pacing. A few people have to slow down as they pass, but he’s not hurting anyone, so I let him be.

I’m more worried about my sister, now. She lives with the aunt that found my uncle. She hasn’t slept in days, worrying about the trip. She isn’t handling the noise and crowds. So I keep an eye on my brother (at least 50% to make sure he doesn’t take some of the chocolate he keeps eyeing when he passes the gift shop), occasionally ask if he wants to watch a movie, and watch my sister slowly descend into a panic attack. Not fun. Eventually I send her to the bathroom, hoping that it will be quieter and she can calm down.

BUT! Events have happened during this time! The plane has been delayed another 15 minutes! It is explained that they have had to replace the plane with one they haven’t yet finished retrofitting. This new plane doesn’t have as much overhead baggage space. They need at least 15 pieces of carry-on luggage to be checked. If the passangers aren’t willing to do this, there will be large delays once loading starts, as people are FORCED to check their luggage. Also, there’s no first class on the new plane. Or charging ports. Or meals. Or in-flight entertainment. First class passengers can request some money back. And if anyone misses their connecting flight due to the delays, tickets to their new flights will be provided upon landing.

People start to get tired and stressed. The intercom keeps threatening them. Now it’s 30 bags that need to be checked. Delays will be even longer if this doesn’t happen!

At this point, security shows up. They ask if anyone will take responsibility for the pacing guy. I do. They show visible discomfort with the situation, and his disability. Can I make him stop pacing? I can try, but probably not. Please do that, it is bothering the other passengers. Oh? Really?? Who could have guessed that?!

My brother is NOT willing to sit down. We stand in the concourse, while I talk to him about sitting down and he makes annoyed sounds at me. I’m not about to force him. I don’t want us to get kicked out of the airport, but can they do that for something as minor as acting weird in public? Mostly, I’m worried about all our electronics, which I abandoned in the open when security showed up. I’m not sure if security will try something with my brother if I leave him to pace while I clean things up.

And now, the hero shows up. The head of security has been called, and he comes over and asks me if there’s anything my brother needs. No, there isn’t, he’s quite happy to pace. It’s everyone else that is being bothered.

“I don’t care about them. He has just as much right to this space as they do. I just want to make sure you guys have everything you need. Would he like a sensory package?”

He wouldn’t like a sensory package, but this guy’s offer of the chapel as a quiet space IS interesting. Mostly because my sister is off in sensory shut-down somewhere, and needs a quiet space. But also because I could relax a little nobody would be watching us, and I could relax if my brother had an enclosed room to pace in. (No chocolates!)

As I’m agreeing to this, my sister returns. Head of Security respectfully tries to explain the situation to her. I look at her hunched body language and tell him to just talk to me. Then I send her to pack up our stuff. He wants to Include Her. She really, really does not want to be included.

He also wants to Include my brother. It’s kind of cute. He’s overflowing with good intentions, but obviously hasn’t had a lot of chance to put them into practice yet. He’s incredibly respectful, but in ways that would work a bit better for people who are more interested in their own decision making than my brother. I’m charmed.

Another person shows up. She is introduced as the Accessibility Specialist, and we are asked if we’re okay with her support. Oh yes, I am very okay with this. After she gets caught up - and she reiterates that everyone else can suck it, my brother is allowed to inhabit this space how he wishes - we get ready to head for the chapel. But the plane is about to land. There probably isn’t enough time to transition there and then back. So instead, we all wait around and listen to our two heroes conspire.

Accessibility Specialist has had the job for a month. Or, at least, she's been PAID to do this job for a month. She's been doing it unofficially much longer. She has IDEAS. So that’s where all the unpolished We Respect Everyone energy is coming from. Head of Security is one of her co-conspirators!

In-between plotting, Accessibility Specialist asks me questions. She hears about the amount of phonecalls, and the unsatisfactory answers. The complete lack of support. The fact that I had told the airline that this exact situation was likely to happen, and then got security called on us anyways. She tells me that this information is very helpful. Her plans will benefit from specific examples.

She tells me how unsatisfactory it is to have to send people to the chapel. They're pushing for a quiet room. I agree that this would have been helpful. My brother would probably have been calmer in a quiet space, which would have helped us AND reduced the stress for others. (Also, both me and my sister would have benefited from the quiet. But I didn’t say that.)

In all the commotion, I’ve forgotten to talk to the boarding people about priority boarding. But Accessibility Specialist is on the ball! We stand off to the side, behind a rope, while the plane disembarks. (My brother starts off pacing RIGHT in the way of the disembarkment, so sneaking into the roped off area is a good idea.) We’re going to be the very first ones to board, even before the people in wheelchairs. I pray that my brother is willing to walk onto the plane – he hasn’t been willing to follow me since we got out of security.

The boarding people are on their best behaviour. They make a special trip over to us to scan our tickets. They send someone down the ramp to check on the plane’s status. We are now VIPs. And we seem to have made the Accessibility Specialist’s day. She is so SMUG as she whispers with the Head of Security!

They ask if we’re okay with them accompanying us to the plane. Sure! I’m having a great time watching their excitement. It’s changed a very difficult experience into a pleasurable one. (For me. They are thankfully respecting my sister’s desire to be ignored. She is still not having fun. And my brother is pretty done with this experience. He’s found some quotes about ‘going home’ and ‘not doing this’ to share with me.)

Finally, we get the nod. My brother calmly follows us down the ramp. We get to the plane and are asked to pause for a moment while they finish moving some storage carts around. Seems reasonable to me, but Accessibility Specialist darts forward and takes photos, documenting SOMETHING. And then we get on the plane.

The plane itself would have been great. My brother happily took a seat. Enjoyed looking out the windows. And was excited to watch Shrek. My sister relaxed. And I LOVE flying. But, sadly, electronics must be stowed during liftoff and landing. My brother did NOT take these unreasonable demands from me well. He eventually forgave me for the take-off misdemeanor, especially after I put on my own headphones and quoted the movie with him. But my sins at landing were too much. For half an hour after he left the airport, he kept repeating, “NO more flying!” and “Not like this!” Any comments about flying for the next day got his hackles up.

So, I won’t do that to him again. But it was a very interesting experience for me! I am glad I got to have it.

And if anyone has flown through Winnipeg’s Richardson International Airport⁴ in the last while, and wants to tell them about any good or bad accessibility experiences, I think there’s someone there that would appreciate it. I want to see what she can accomplish.

PS. She’s also started a program where you can practice getting ready to board a plane! You sign up and they take you through the whole experience, from signing in to walking the boarding ramp. (Or, possibily, just whichever portion is concerning you.) I wish I had thought to contact the airport itself, rather than just contacting the airline and looking at the government’s resources. Good things are happening there.

¹ neurodivergent – brain works in a non-typical way

² Down’s Syndrome – an intellectual disability

³ echolalia – communication by repeating/echoing things heard, either right after hearing them, or a long time later

⁴ Winnipeg is in Manitoba, Canada

#accessibility #disabilities #airplanes #airports #I got a response from her yesterday #after sending in feedback (so she'd have more documented examples)#saying she's going to be 'sharing it widely'#so I decided I'd tell this story one more time #she deserves to succeed

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