Travelling with a hidden disability

I don’t drive. And no, it’s not because I’m autistic. It’s because I’ve always had bad eyesight, and whilst I scored a perfect 30/30 on my Learner written test, I couldn’t visually handle driving.

This means I have to rely on either someone else to drive me, or, to be independent, public transport.

As an autistic person, I really struggle with managing the sensory environment of public places – lighting, sounds, smells, proximity to other people…everything can be very overwhelming. I also can have really bad executive functioning days – this means that there are days that I can’t do something simple like hold onto a handrail on a train or a tram (the two main public transport services I use in Melbourne).

I’ve also had my ankle fused, which means not only can I not run, but there are times, especially in winter, that I can’t stand for long periods of time, nor do I have the capacity to balance myself if a tram brakes suddenly, or if I’m on a train travelling at over 100km/hr.

Focusing on the ankle for a minute – I’ve had horrible experiences getting a seat on public transport when I’ve been using crutches, let alone more recently when people can’t see my disability. I’d noticed that people were quick to glance at me, quite obviously seeing I had crutches, or a walking stick; and then go back to their phones without offering their seat to me, or acknowledging my existence. On exiting the train I’d be pushed by people trying to get on to secure their own seat, again like I didn’t exist.

It’s even harder now that I’ve fully recovered from my ankle surgery. I wear somewhat regular shoes, albeit high top boots because of the size of the orthotics I wear. I rarely have a walking stick with me. I don’t -look- like I have a physical disability.

Autism isn’t a visible condition either. Unless I’m overwhelmed. Even then, I’ve learnt strategies to hide my overwhelm when in public. I’ll be like a lot of other public transport users and wear headphones, and try to engross myself in the music. I’ll play with my watch or bracelet, something that when an autistic person does it it’s called stimming, yet non-autistic people do it as well! People who know me well can pick up when I’m super anxious and strssed based on my hand movements, and if I’m with people I know I’ll go really quiet and recluse.

I generally travel on public transport on my own though.

By the time I navigate entering a train station or finding a tram stop, through all the sensory distractions, I’m usually quite spent by the time I get on the train. I don’t have the capacity to ask for a seat. I don’t have the capacity to deal with someone telling me I don’t have a disability and don’t need a seat, just because it doesn’t look like I do.

There never seems to be an option to ask a public transport staff member for help in acquiring a seat – plus I do tend to find the staff are just as bad as passengers in assuming I don’t have a disability.

Some of the ways I try to navigate these issues includes:

  • walking. It’s less overwhelming, and for the most part less painful to walk from Southern Cross Station to my work in Calrton than to try get a seat on a tram going up La Trobe, Bourke or Collins Streets. IF I have to stand on a tram, the sensory overwhelm, and physical toll from having to position myself for each stop can be unbearable, at least with walking I can take my time, rest when I need to, and not have to stress so much about the surrounding environment
  • picking quieter times. Travelling before or after peak hour can help.
  • Avoid travel altogether. Sometimes I just don’t have the capacity to put myself through the stress and anxiety, and I’ll cancel plans and stay home.

So I don’t have the social and processing capacity to ask for a seat. There’s times I shouldn’t be standing due to executive functioning or physical pain.

What options do I have?

I’d never ask someone sitting in the disabled seating to give me a seat, because I can’t assume that someone sitting there doesn’t need it – I’m sure there’s always people who do sit there that don’t need to, but I’d be contradicting myself if I just assumed who did and didn’t.

Instead of what options do I have, it should on the public transport providers, and the wider public, to acknowledge and support people who need support. Remember, 1 in 5 Australians have at least one disability, so it would be extremely unlikely for a public transport user not to have a relative with disability.

If public transport providers worked with disabled people, there’s simple ways to try fix the issues myself, and so many other Australians, have each day.

My friend and fellow disability advocate Asher has multiple disabilities, and has created some invisible disability badges and lanyards, which are free for others to download, print and use under a Creative Commons license on Wikipedia:

Having a badge or lanyard is a start. Public transport providers, and the government can help my having awareness campaigns around these badges and lanyards. Instead of just having a sign above the accessible seating which says to make your seat available to someone with a disability, posters that promote the invisible disability badge campaign across stations, onboard trains, trams and buses, as well as repeated announcements on services would help. “The next station is…” announcement on trains could be followed by a “remember to be aware of your surroundings and offer someone who needs a seat” message. Training PT staff and being proactive on busy services is another way. Also, funding lanyards and badges – because we all know that disabled people are less likely to have sustainable, high income employment.

Most importantly, people need to be respectful of others.