Memoonah Hussain describes her difficulties with her invisible disability and how it has affected how she travels
Cairns Airpot, 4.20am: ‘Don’t you know there’s a queue?’. Jokingly, I replied, ‘I don’t follow the rules.’ My roommate of two nights scoffed, looking disgusted while the airline staff member returned to take me to the check-in desk.
If you look at me, all you will see is a short brown girl wrapped in many layers of clothing who looks 16 (although I’m actually 21). I don’t look much different to another normal person. And that’s the problem. I look normal.
At most airports I’ll be asked whether the special assistance is actually for me. I’m not annoyed by this question. I don’t have a walking stick or a wheelchair and I’m young, so one doesn’t expect someone like me to request special assistance. I do, however, become disappointed when I’m asked for what reason I need it because it’s normally one of those airline staff members who doesn’t allow a single gram above the luggage allowance. But normally I’ll volunteer that information anyway because I’m quite open about my health issues.
I have a lot of health issues and recently I’ve started joking I should play bingo because I’m having to write about 20 or so things down in the pre-existing problems form. I guess I could sum it up with the following: benign joint hypermobility syndrome, costochondritis, migraines, central sensitivity syndrome and fibromyalgia. As a result of these conditions some of the side effects include: brain fog and an inability to think clearly; I can’t stand for long, I sometimes can’t walk, severe chest pain, I can’t keep my back straight, I can’t carry weight, I have problems with my hands, I’m always in constant widespread chronic pain, and I suffer from extreme chronic exhaustion. But you wouldn’t be able to tell this just by looking at me.
Travelling with invisible disabilities is difficult, especially because they’re invisible. And the difficulty is the same whether I’m travelling alone or with friends. There are difficulties from once you’ve booked your ticket to flying, accommodation and sightseeing. These are just some of the complications of travelling with invisible disabilities that I’ve faced:
After booking my flights, I have to ring the airline to request special assistance. Frustratingly, every airport in every country has different procedures for special assistance. As an English speaker, it’s easier to navigate this in English-speaking countries or if the staff at the check-in counter have a professional working proficiency in English. I experienced issues when I was flying back to the UK from Bucharest, Romania. Despite having had called the airline to ensure assistance, at the check-in counter I wasn’t told to go to the special assistance desk meaning there was no assistance in place. My friends had to help me with my hand luggage when boarding and a very kind stranger carried my bag up the stairs at Luton Airport after on-site staff refused to assist further. I consider myself to be incredibly fortunate that the lady who assisted me a week earlier on my flight to Romania was working at border control and recognised me. She helped fast-track me through border control. If she had not been there, I strongly doubt I would have been assisted.
It’s also really exhausting for me to travel. Having to reweigh my luggage countless times because I keep going over the allowance takes a huge toll on my body before I’ve even set foot on the plane. Then there’s the issue of getting the luggage from the taxi (if I’m travelling alone) to the check-in counter. When I returned home from Melbourne, I had two large suitcases weighing just over 32kg, 4 – 5kg in my purse, a 10kg hand luggage duffle bag, and a 2kg laptop. I don’t know how I managed to drag this to the check-in counter apart from constantly stopping to take a break and clutching my chest. I was also over my luggage allowance, so that took a good twenty minutes of lifting and dragging heavy bags multiple times. By the time I had finally booked my luggage in I was absolutely drained and had a lot of chest pain.
But it’s not just getting to the airport and dealing with baggage that’s an issue. The flight itself is problematic. It doesn’t matter whether it’s an hour flight or an eighteen hour flight, both are physically and mentally gruelling for me. Of course, a longer journey time impacts me more. It can take me over a week to get over the jetlag but when you’re meant to be sightseeing and have limited time and a tiny budget, you can’t really spend a week in bed. Buses such as Greyhound also pose similar issues to flying, especially when you’re stuck in a small space for fifteen hours.
The seats on planes and buses are not very disability friendly. Space is tight, and I end up having to contort my body in weird and uncomfortable ways to deal with any pain that’s been caused by sitting in these seats. The dream is always two seats or an entire row to yourself so you can lie down across the seats. But, unfortunately, on most international flights this is a scarcity and you won’t be lucky enough. I’ve been told to pay for business class seats by a large international airline if my disability impacts my ability to sit on economy seats, but this is something I, like most, simply cannot afford. This also calls into question whether this is discriminatory towards people with disabilities.
Once you arrive to your destination, there’s the issue of getting to your accommodation and the accommodation itself. I have had hostels attempt to charge me extra to move to a smaller dorm size so I can obtain a bottom bunk because I physically can’t get up and off a top bunk. One hostel told me I should pay for a private room and that they would tell someone in a wheelchair to pay for a private room so they don’t end up being in a top bunk. After one hostel manager (in a different hostel) called me ‘unreasonable’ for refusing to pay AU$5 extra for the room change, I called Australian Human Rights who advised me on the 2010 Equal Opportunities Act. They recommended that, if I were told to pay extra, I should tell the hostel to call Australian Human Rights who would then inform the hostel that it would be discriminatory for me to be charged extra in this situation.
Sometimes you get very inconsiderate roommates. The girl who scoffed at my ‘I don’t follow the rules’ joke and her friend were adamant that the air conditioning was not on despite the nights being horrifically cold. My bunk was right under the air conditioning, meaning I was getting a significant amount of the cold air hitting me and this was causing severe chest pain. I informed them of this so they switched it off, only to switch it back on shortly after as one of the girls was in the bunk above me and could easily reach the switch. It was by pure luck we had the same flight to Melbourne booked, meaning we could split the fare to the airport so that we saved a lot of money.
And then you have the difficulties with actually exploring the beautiful city you’ve arrived in. As I can’t stand in one place for too long, there are times where I have sat on the ground or road because there are no seats at the bus or tram stops. When it comes to seeing the breathtaking viewpoints in national parks, I have to take frequent rest breaks especially if the terrain is steep uphill because I feel like I’m having a heart attack.
When I’ve been with friends travelling I feel like a burden and nuisance asking them to stop because I need to rest, despite their reassurances they’re more than happy to take their time and are understanding of my health issues. There are times when I’ve had to convince a friend to continue on without me because she didn’t want me to be alone while the rest carried on. I didn’t want to be the reason she missed out on spending time on a world famous gorgeous beach and watching dolphins even though I was heartbroken that my body inhibited me from experiencing it. In the Louvre, I spent a good half hour, if not longer, just sitting on the floor almost in tears near the inverted pyramid because of the pain I was in; I just couldn’t walk anymore.
Throughout the entire journey I’m struggling with the pain and once I’ve returned home, the pain can last weeks. It’s as if I’m being stabbed with a thousand knives all over my body. I can’t move, let alone walk. But it also impacts my mental health.
My mother said if it wasn’t for my invisible disabilities, I wouldn’t be doing the things I do and pushing myself. But for me, I feel like if I didn’t have my health issues, I could do more and push myself even further. It just feels like I’m constantly facing battles and the pain really doesn’t help. However, having said that, I am proud of the things I have accomplished while travelling with my invisible disabilities. I’m proud of the fact I’ve been able to stand up for my rights and push the limits of my body. I’m proud that I managed to travel solo for the first time ever and had the opportunity to witness such magnificent sights. I’m proud that I’ve managed to deal with the barriers that people such as myself face when travelling. But that’s not something I should be proud of. Travelling with invisible disabilities, or even disabilities in general, shouldn’t be this difficult.