How do you travel on public transport?

[asUpergrl]

I've just been diagnosed with fibromyalgia yesterday by a pain specialist after years of everyone tossing me into psychiatry whenever I complained about pain because my pain started with sensitivity to needle sticks and tactile defensiveness (I do have some sensory processing issues and a developmental disability too). It was such a relief.

One thing the doctor said to carry on with was some kind of work. Which suits me because I will fall apart without the structure of going to work daily and my entire identity is wrapped up in work. But getting to work entails a 1 hour commute where I usually can't get a seat. It's almost impossible to get work near home because I work in a very specialized field and there aren't any work places near my home and moving isn't an option either given the mad housing prices where my work place is.

I wonder, how do others with fibro and a lot of fatigue travel on public transport? I can't get anyone to give me a seat because I look like a teenager even though I'm in my 30's and people will give me looks when I sit down on the train and someone who looks kind of old gets on. Mind, I dont even take the reserves seats for the elderly and physically disabled, just the regular seats and I get looks already. I used to take uber but it does add up and with paying a psychiatrist and pain specialist, I can't afford to uber all the time now.

 

[Rebeccare]

Public transportation is really tricky. In London a few years ago they started a program where they gave badges to people with invisible disabilities, with mixed results. I wonder if you would feel comfortable maybe making your own pin? Or if wearing a pin indicating that you have a disability would give you the confidence to ask for a seat?

 

[asUpergrl]

I think awareness of this isn't even good where I am. And there's been incidents of people snapping photos of people who are visibly well for not giving up their seats, posting them on social media and starting an internet mob over it. As I often travel in my work uniform, I'm terribly afraid of such things happening. I've seen the TFL movement and I'm wondering if I should try to start one with the transport authority here. I'm considering a walking stick with a seat, however weird that looks.

 

[MEPatient345]

What about an electric wheelchair, where you can just wheel onto train and stay by doors? They sell them for about $2000.

 

[i-lava-u]

I'm considering a walking stick with a seat, however weird that looks.

That sounds like a great idea!

 

[ukxmrv]

I think awareness of this isn't even good where I am. And there's been incidents of people snapping photos of people who are visibly well for not giving up their seats, posting them on social media and starting an internet mob over it. As I often travel in my work uniform, I'm terribly afraid of such things happening. I've seen the TFL movement and I'm wondering if I should try to start one with the transport authority here. I'm considering a walking stick with a seat, however weird that looks.

Not sure how people are in your area but my experience of having a walking stick with a seat on public transport and on the streets is that if you are a young person then they ignore it.

I've had my walking stick kicked out of my hands by commuters many times and even been left lying in the road when attempting to cross. They just don't see a disability aid if a young person uses it. Over crowding does strange things to people.

A walking stick with a seat is also rather heavy. It means another thing to carry and adds to the burden of getting to work. It's also not stable enough to sit on in public transport and it you "perch" commuters will knock you over. They do to me anyway.

The wheelchair can be a better option but you may not be able to get on / off platforms up and down stairs unless there is true disabled access. Some public transport is accessible by wheelchair but means sometimes having to wheel for far longer to reach than people walk.

I've got one of the London transport badges and it is usually ignored if travelling at peak times. People keep their eyes down and ignore the disabled.

Disabled people (young ones anyway) need to be quite assertive. Lack of access to public transport seats was a major hurdle for me when I was well enough to work.

 

[i-lava-u]

@ukxmrv so sorry to hear people have been unkind to you.

I was once riding on the Metro (subway system) in Washington DC during a very busy/crowded time of day and I was using my mobility scooter. I was in the doorway, literally squished as far back as I could go with a few people behind me, and against the side so people could get past me. Packed in like a sardine. Where the doors are, there are the "walls" that go up to the ceiling so I was obstructed by view except the front part of my scooter poking out a bit.

A man that was on the other side of the "wall" that could only see the bit of my scooter poking out, yelled angrily to me "you need to move that thing out of the way and make room for other people"

The "other people" that were packed like sardines right next to me (including a little kid who was holding onto my scooter for stability) looked at me with horror as if to convey with their eyes "did he really just say that!?

I just took a breath, smiled widely, and yelled back "sure, I will move, where would you like me to move to, UP??"

Everyone started laughing. He "peeked" his head around the "wall" and saw that he was incorrect to assume I was just "hogging" the whole area, then looked very embarrassed, and did not say a word after that.

The mother of the little kid holding onto my scooter took the opportunity to teach her child (loud enough for the man to hear ) about the importance of being kind to others, good manners and not judge others. It was a good day!

 

[asUpergrl]

@ukxmrv oh my god, that sounds dreadful. I usually choose the newer train lines as they are less crowded. The older line that serves my area is impossible crowded.

I'm not keen on a wheelchair as people here 1) hog lifts meant for wheelchair and pram users. They literally all rush into a lift and twiddle their thumbs as the doors close on whatever poor person is on a wheelchair or pushing a pram outside the lift. And 2) if you're seen with a chair and you're young and you can sometimes stand or walk, you're probably just asking to have your photo put on social media and goodbye. Also, I need to keep up the image for my employers that I am able to continue my work. A chair stick thing might be pushing it, but a chair is just asking for trouble. And no, we don't have employment protection for persons with disabilities here.