Why I really need that seat

Steffie with her crutch at a trainstation

Steffie with her crutch at a trainstation

 

Priority seating. I suppose we all have an image that comes to mind when we see the priority seating sticker on public transport. It may be of a frail elderly man or a heavily pregnant lady; your imagination might even conjure up a person on crutches who recently broke their ankle. However, does a seemingly healthy looking twenty-one year old come to mind?

My parents always taught me to stand up for people on public transport who look like they need a seat, so I did. As I’m dependent on public transport (I travel almost daily with some form of public transport, mostly buses), I was always offering my seat to those in need. Yes, there were times when I would rather be sitting than standing, but my discomfort is nothing compared to what those in need of a seat must go through if they end up having to stand. Sometimes I would offer my seat up to people who would politely decline the offer. That’s okay, at least I asked.

Due to a positive yet perhaps too innocent outlook on life, I had always expected my fellow commuters would give up their seats as easily as myself. My God, was I hugely mistaken.

It all started when I was about thirteen. I live in the Netherlands, the most cycling-mad country on earth, and therefore I cycled to school. One day I ended up injuring my ankle and was told I needed crutches. After eventually making it to the bus stop, I got on the bus. (Note: we don’t have school buses over here, we need to take regular public transport.) The bus was packed, it was rush hour. Nobody stood up for me despite my being on crutches. I’ve always been shy and did not dare bother anyone to ask them if I could perhaps have their seat. No, I just stood there hopelessly trying to keep my balance until someone got off and I could sit down. The worst part was that all the bus’ occupants stared at me.

Because of my never ending clumsiness (which, much later, proved to have a reason) I would regularly need crutches. As the years went by, I was offered seats more often, but most definitely not all of the time. What helped me get a seat was the fact that I had mobility aides with me, though all that was about to change...

As the years went by, my health unfortunately declined, and I was diagnosed with a long list of chronic conditions – invisible chronic conditions. The need for a seat became a necessity. The conditions that cause me to need to sit down are: a dizziness disorder, Ehlers Danlos Syndrome, and PoTS. Ehlers Danlos Syndrome (aka EDS) is a connective tissue disorder which causes a plethora of health problems that can heavily impact day-to-day function. EDS can, in some cases, be fatal. Due to EDS, my joints are hypermobile and unstable, leading to frequent daily dislocations. As you can imagine, standing up in a bus that makes sharp corners, sudden stops, and often lacks things to hold onto, is not recommended for EDS warriors. PoTS (Postural tachycardia syndrome) for me can be very disabling at times. PoTS is a type of dysautonomia and causes an increase in heart rate of at least 30 bpm when standing, fainting or feeling faint, feeling short of breath, dizziness and more. Enough reason to need a seat. Yet even when trying to explain these conditions to people while asking them for their seat, I am met with disheartening and upsetting remarks. Here are six of the bad experiences I have had when needing a seat on public transportation:

  1. I was on the train to a festival and my boyfriend asked a group of teenagers if I could have a seat, because there were no other seats. He explained that I have a disability. Their first response was to stare and look at me from top to toe, they were trying to spot my disability. This is something I have experienced on many occasions; humans are openly curious and love to find out what’s wrong with those less fortunate. Eventually one of the girls stood up. Upon my sitting down she loudly said to her friend “But I like to sit too!”

  2. That same day I got on the tram to go home. I was exhausted and in desperate need of a seat, especially as I unknowingly had the beginnings of bursitis in my foot. Again I was feeling too shy to ask, so my boyfriend asked a lady on the priority seating if I could sit there. She frankly told us she had been working all day and that I had bad luck. Thankfully, a lady nearby let me sit down.

  3. After a long day at the hospital I caught the busy bus back home. It was hot weather, which is a trigger for my PoTS. There were no other seats and all the priority seats were taken. I asked the lady nearest me if I could please have her seat, and she shouted “Why?!” in a very mean tone. I started to explain that I’m chronically ill and cannot stand for long. Before I could finish my sentence she interrupted me and told me: “Well I’m a little bit sick myself today so you can’t have my seat!” This is the incident that has frightened me the most whilst travelling with public transport. I looked around for help, yet everyone was unwilling to help. Thankfully the lady opposite stood up for me, which resulted in me going backwards, which does not help travel sickness, and sitting opposite the person who had just been incredibly rude to me.

  4. Once again I was on the way home and was getting onto the bus. It was rush hour and I asked a lady if I could have her seat because she was sitting on priority seating. She told me her bag was heavy which meant I couldn’t sit. I was using a cane as mobility aide whilst this happened...

  5. When my joint pain is particularly bad, I rely on Smart Crutches to help me. I passed a mother with several children while getting on the bus with my crutches. I sat down on the priority seat, since that is the nearest and easiest seat for me when I have my crutches. The children sat round me, when their mother saw I had “taken” her seat she swore at the children for having let me sit there. Some of the children were young enough to have easily shared a seat and some were old enough to have stood. It was an unpleasant journey as the two children opposite me kept whispering things about me and pointing at me. One even purposely kicked me.

  6. Doctors consider PoTS an innocent condition as it’s not dangerous, however for patients PoTS can put you into dangerous situations. Earlier this year as I was stepping into the metro, I fainted. This is what I mean when I said PoTS puts you in dangerous situations. Nobody considered standing up until my mum anxiously shouted if anyone would help and give me a seat, whilst she was still holding onto me. Everyone had been too busy staring. I ended up in the hospital later that day.

All of these experiences have made me very scared when it comes to travelling on public transportation. I do everything I can to move appointments so I can avoid rush hour. The feeling of dread when I see a bus/tram/train/metro approaching that is full is awful. The anxiety of public transport greatly restricts me. Thankfully, I have had good experiences too, such as people carrying my bag or helping me up. There are people who stand up for me regardless of if I am using a mobility aide or not. It is just unfortunate that the bad experience stand out more.

So what can you do? If you are able to stand, look out for people in need of a seat—not everyone who has trouble standing uses a mobility aide. Keep in mind that sitting on the priority seating comes with the responsibility of potentially giving up your seat. Don’t ruin someone’s day by being rude to them, and if you feel the need to keep your seat, then help the person asking you by giving them another option. If someone explains why they need to sit down, listen to them. If someone has taken their time and energy to politely ask you for a seat, they deserve a polite answer.

If you are like me and need a seat, here are some tips for you, too. Try and get to the front of the queue. Yes, some people will push past you, but you will still be in front of others. Travel frequently by bus? Be kind to all the bus drivers you meet. Big chance they will remember you and help you if you are in need. Don’t feel ashamed of yourself if you need to use priority seating, it’s always better than collapsing. Don’t get into an argument with whoever refuses you a seat, because they honestly are not worth your time. Contact your local authorities about awareness for invisible conditions. Most importantly, remember that for every rude person you meet there are twice (if not more!) as many kind people out there to help.

So to conclude: I may not be on old person, I am not pregnant, and I have not recently broken an ankle – but I still definitely need that seat.