Slow and Steady: A Disabled Lady's Guide to Hitting that Road
Updated: Jul 22
TW: This post contains symptoms of FND that some readers may find triggering.
This week I have been staying with an old friend on the beautiful Welsh coast enjoying the heat wave and over-indulging to a marvelous degree. Next week I'll tell you in more detail about the romantic encounters I enjoyed while I was away (the past 6 days have just been littered with sex, love and happiness), but before I do that, I thought it would be sagacious to apprise you of the difficulties people like me face when trying to travel independently.
A few years ago I wouldn't think twice about taking a trip. I used to love spontaneous adventures, hopping on a train and just seeing where it took me... making friends on the way and living like that shit Kerouac every thirteen year old girl loves. There is, of course, a reason why they do. I've been known to think sometimes that beauty is a lack of context; and on that fabled road of wonderful strangers and foreign places, we really are saved from our monotonous lives by that blessing of newness. These days - it's a little different. I have to plan before I cross the road to grab a pint at my local, and every dog walk is hinged on a hundred contingencies. Travelling alone as a woman is dangerous enough, but as a disabled woman you are so much more vulnerable.
The first thing I do is imagine the worst at every stage of the journey and create a toolkit to help me prepare for those eventualities. I ask myself questions like this: What will I do if the train breaks down or is re-directed? How will I feel if I have a seizure or wee myself in public? On my journey back to Manchester the train was so badly delayed that it ended up stopping in Wilmslow and we were casually asked over the tannoy to get off and change there. But I had booked this train (despite its lack of convenience and its extra expense) because I am not yet able to do changes on my own. After a little cry and a big wobble I managed to use my resources to ask somebody to help me call my dad to pick me up there and they were able to help and wait with me until he arrived.
The next thing I do is find trusted friends to send and receive me. The only segment of the journey I actually did on my own was the train from Manchester to West Wales and back again. With things like this you have to do it one step at a time. Maybe one day I will have control enough over my FND to make entire trips independently, but for now I am taking the first step and celebrating the triumph.
It's important to inform the staff. It's a lot better to rely on the staff of the train than on the general public. The latter, though often magnanimous, are not payed to look after strangers, the people on the train are. Utilize that support even if you're having a good day, because with this condition things can change so quickly.
Since I am sometimes unable to speak, I make myself a phrasebook. When some people go to France they might carry a lonely planet guide of things like 'where is the loo'; but since my condition gives me periodic aphasia, I need to make a phrasebook in my own mother tongue! In my pocket I carried note-cards saying things like 'I am disabled, please help me get off at Swansea', 'please help me to the toilet,' 'can you help me with my sun-cream' or 'I need a glass of water'. I also carry a notebook and pen for things I couldn't plan ahead for.
I wear a lanyard with details of what to do in an emergency.
I find a friendly looking lady on the train. I know it's probably prejudiced, but as a woman, sometimes the help I need is easiest coming from another woman. I look for a friendly smile, a colorful jumper or a policewoman if there is one and ask if they wouldn't mind keeping an eye on me.
I make sure I have at least two trusted pals that know the times that I will be travelling and keep their phones nearby in case of emergencies.
You might think that it doesn't sound worth all that effort to preserve a little independence. You might even think that it doesn't count as independence because a lot of helpful characters were necessary to make this trip possible - but it does count, and it is worth it. When I was sat on that little Welsh train completely on my own, able to nibble a crumb from the crust of my old life, bolstered by bravery and sensibility, my whole future stretched out in-front of my eyes as woman who might never be 'well' the way I once was, but who would find a way to find joy and wonder all the same.
When I heard that announcement on the tannoy in Wilmslow, I didn't start crying because I didn't have a contingency plan (I was so prepared), I was crying because the person saying it wasn't thinking of people like me. Hardly any adjustments are made in the world to make life safe and accessible for people who have different needs to the majority. When I heard that announcement what I really heard was 'you are not as important as 'normal' people'. I hope to God that life is easier in a few years time for people like me; but in the meantime, I know it's not my problem, it's theirs.
I would like to thank all the wonderful people that helped make that trip possible. Thank you to my mum and my dad, to Deryn, to Sian, to all the people of Narberth, and to the two kind-hearted strangers who helped me carry my bags and get off the train as I waddled through Wilmslow with puffy eyes. Tune in next week as I tell you about the love stories I heard over glasses of wine and a really nice shag with a kindhearted gentleman!