No More! (Wheelchair Access Issues)

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Had an absolute nightmare of a day due to access issues. I'm feeling extremely isolated at the moment and disability feels like a prison sentence due to issues getting out. Since I've gotten the new powerchair, I've tried to get out a bit more as so long as I can get to the station and back I can get into London where access is a lot easier. Social contact is however always a rarity and I'm really feeling it. Due to my autism, it's very much use it or lose it socialising wise. I mean, I've never had a massive issue with it before but as I've been isolated for so long every social interaction is extremely overwhelming now. Now, the way around that is to do it more regularly and get back into the swing of things but the constant travel issues are really getting in the way. Plus, I had big OCD issues as a kid but bar the odd minor flare up, I've been fine for years. However, being stuck indoors most of the time has really ramped that up to eleven.

The main issue with the Meetup site is that whilst there are many groups, often they don't meet in accessible places as a lot of pubs in London are a complete nightmare access wise. I've found a couple that do meet in accessible and was going to head to a Star Trek fan meet tonight. This morning I got a call that one of the lifts at Rochester Station wasn't working. Now, I don't know how they got away with this but the new station was only built in 2015 and yet there's no alternative if the lift isn't working. There's only one lift per platform and if they don't work then you're out of luck so in short the station isn't accessible. It's getting a taxi (good luck getting a wheelchair accessible one around here!) so it isn't an option. It's a constant source of anxiety as I honestly have no idea on any given day whether I'll actually be able to travel and the terror of turning up and being told the lift isn't working is a constant one.

Now, in the past I would have just not travelled but today I just thought "No more!" and snapped. I've had an absolute nightmare trying to get around over the last year and thought I'm sick and tired of being treated like a second class citizen, I'm going to kick up a stink about this. The lift situation infuriates me (in addition to other access issues). I can't think of any other group the train company would be allowed to bar from using their service but apparently it seems that nowadays, disabled people are the only group that it's socially acceptable to discriminate against. It dawned on me that in 2022, it's still fine and dandy for disabled people to be given an inferior service or to be barred from using a service due to their disability. If that isn't discrimination then I don't know what is.

I thrashed it out with the train company and they booked me a taxi for the return journey from London so I felt some sense of victory (although I really can't stand taxi journeys). For my outbound journey I tried to go to Strood station which is close but the path was flooded (it had barely rained!) so had to turn back and luckily the lift to the outbound platform was working at Rochester, it was just the other one that wasn't.

The main thing that gets me down is the sense of feeling trapped though. It's a complete gamble as to whether I can actually get out due to the fact that the train company don't make proper arrangements for disabled people and if the lifts are down (which is a regular occurrence) then I'm stuffed. The path to the only other nearby station is prone to flooding so that isn't a viable fall back option. I'm really questioning whether it's actually viable going to university next year due to all this. The only option would be getting taxis door to door again which killed me due to the travel sickness and then there were big issues with that as the only company that would do my area when I wa at Birkbeck were also crazily unreliable and I'd often have to make my own way in by train defeating the point. The thing is though, I'm 31 now. I caught Covid when I was 28 - the end of my twenties came and went and I fear I'm just going to fester for the rest of my life. I want to be out there doing stuff and it really infuriates me that I'm being barred from doing things because of how discriminated against disabled people are in the UK. Now sire, I've done stuff since and I've had fun at conventions but that's kind of the thing, the only way to be 100% sure that I'll be somewhere is to leave an entire day for travelling the day before and then stay in a hotel which is why I've gone to conventions but I'm really craving regular social interaction and to be doing something productive. The degree at the New College of the Humanities would mean I'd get both but again we come back to transport.

I do think I turned a corner today though - I said "No More!" and did raise hell and pointed out how discriminatory their practices are. I wouldn't have done that a year ago. I don't like being constantly angry and complaining but I think saying nothing just lets them get away with it. Whilst nothing will happen as I'm only one guy, I think giving them a headache and unnecessary paperwork every time the lift is down is a little bit of revenge I can do as they will have the tedium of dealing with it. My resolution for 2023 is to always complain and point out discriminatory practices. I refuse to let people get away with treating disabled people like second class citizens.
 
It seems you have put your dog it first!

Just be careful out there it's pre Christmas and people are on edge
Complain to your MP about access too
 
@Maymay941 Yeah, I feel a lot safer now I've got lights and high-viz stuff.

I'll definitely be taking it further. If/when I start at uni I'll definitely be doing a YouTube blog about access issues as a way to raise awareness (and vent if nothing else!).
 
@Maymay941 No worries, I'm always making them these days due to neuro issues.

Yeah, I'm just sick of access issues. It's a constant fight though and exhausting but I just want to live some kind of life!
 
@Sci_Fi_Fan I’m so sorry to hear about your travel frustrations and your feelings of isolation. I can relate. I didn’t have a car for two years, in a city with a horrible bus system, and it was absolutely hell. You’re correct that you need social interaction; every human does. Scientists say that we are easily the most social animal on the planet. So whatever you do, don’t feel guilty for your desire to socialize because it’s 100% natural. It’s particularly important at your age.

It’s absolutely the pits that the lift was busted. You did the right thing by reporting the issue. How was the Trekkie group?

Is there any way you can live closer to school? Like, is there any way you can get government assistance for a place to live near there, or regular transport? I believe that you live with your mom, correct? Is there any way the both of you can move to a more modern area with better accessibility? I know you’re not working so your independent financial resources are limited. Is there any kind of program that can help you get your own car with accommodations for disability if you need them? I really wish your government was helping you more! There are likely nonprofits out there who would help you more than your government.

RE: school, would you consider getting an online degree instead, so you aren’t forced to travel and attend in-person? Whatever you do, please do not give up on that dream. Choosing to educate one’s self is one of the most fulfilling things I have ever accomplished. At age 46, I still have school loans, but I have zero regrets.

Have you tried any MeetUps with fellow autism sufferers, or other folks with neuro issues? Their support and humility may be particularly helpful for you. It would be like us on the forum here, but in-person! You could get real hugs rather than just text in posts! It’s crucial to have friends who share your excited interest in “Star Trek,” but it’s also important to have friends who share your circumstances, not just your interests, for they will provide you with the support of empathy, understanding, and relatability. One of the best things I ever did in life was to take these classes that were held at my local hospital, which were created by Stanford University and the National Institute of Health. One was called “Living With Chronic Conditions“ and the other was called “Living With Chronic Pain.“ There, I met people who are so much worse off than me, which made me feel better about my circumstances. Those people also had the greatest humility and offered of anyone I’ve ever met. They accepted and cared about every human being. It was very touching. They were a big part of my ability to get out of the worst depression of my life and to get on with going out in public with diapers and OAB. It sounds like you could use something similar. Again, they were free classes put on by non-profit groups, so I recommend approaching that kind of assistance in addition to pursuing government aid.

I wish you better luck the next time you go out!
 
@snow
Great to hear from you! All the best for Christmas and New Year!

The Meetup was great thanks! I have been to a groups for autism sufferers but I found it overly earnest and serious and everyone seemed defined by their disability. It's why I much prefer sci-fi/fantasy groups as often people are also neurodivergent there but it's not the main talking point as it were.

In terms of studying, I've really reached Zoom saturation point as it were. I really need to go somewhere in person as I find that's much better and also there's the social aspect. Part of my issue at the moment is just feeling too boxed in. Accomodation is absolutely nuts, one halls of residence was asking £19000 for the year and I mean, I couldn't have afforded that when I was working! I'm unable to drive due to my issues (was going to learn before this all kicked off). I think in terms of transport, due to were the new uni is, getting taxis there wouldn't be as bad as last time and I'd just do it on lecture days and risk the station on others, I think that's the best workaround as last time due to the limitations of my old chair, I was completely reliant on taxis all the time. I'll be very specific with my access needs re cars. The main issue last time was that due to my old chair, the only way to get out was to go via taxis all the time and that was too much. I'll speak to the uni about it. Return journeys are always the worst so just getting one back that way would be fine. The only bonus of last night was that I know the organisation the train company uses for taxis and so I could see if they do student stuff when I apply for Disabled Students' Allowance again. The main issue last time was the outbound travel in terms of taxi availability and that's usually okay on the trains. Indeed, I found at Birkbeck it worked best when I'd go in by train and come back by taxi but the company I was using then wouldn't do that annoyingly.
 
@Sci_Fi_Fan I can imagine what you mean about the autism groups defining a person as tgeir disability. I’ve encountered that feeling before in some group mental health therapy sessions I’ve attended, though most have proven helpful to some extent. Maybe a chronic conditions group would be different than an autism group? For instance, in the chronic conditions group I attended, everyone was still working and had partners and children (except me!). The point of the class was to learn to cope with, and approach, chronic conditions rather than to fully succumb to their weariness. Just an idea. I’m sure sci-fi/fantasy groups are really fun and I agree, would be full of other neurodivergent folks. I’ve been to a few D&D parties that friends put on, and fantasy game groups at game shops with an ex-boyfriend, so I’m familiar with that type of crowd (intelligent, exciting, rowdy, nerdy - I love nerds!).

I’m with you on Zoom fatigue; I’m really starting to want to actually be seen and to see others in the flesh at work. I’ve worked for a company now for 1.5 years and I’ve never met anyone from that company in-person, nor seen the headquarters campus with its 25 buildings (granted, it’s in another state!). I want people to see my entire outfits and I want to see theirs - but only 2-3 days a week and only if everyone wore masks (which nobody does in the US any more except at hospitals). As far as school, I can’t stand online classes and I learn ***much*** better in the front row of an in-person class. So I get it.

What a drag about the lack of taxi availability. What about Lyft or Uber, do those run in your area like they do all over the states? For a small monthly fee - maybe $12-$20, Lyft offers a remarkable discount if you’re disabled. In the US, Lyft and Uber cost less than 60% of taxis and taxis are incredibly scarce except at the airport.

I get carsick also, so I’ve learned to sit in the front seat. It was a little awkward to start doing it at first but I found most drivers don’t mind at all. Companies dictate that drivers have to allow you to sit up there if you want, in fact. In circumstances where I do have to ride in the back of a car, like with my parents, I find that sitting on one side makes me less carsick than sitting on the other. Have you tried both sides, or the front? I also think it’s easier to get carsick on the windy and bumpy roads of the UK than in the US, though parts of the east coast are much more petite and windy like in the UK. It’s because there, they’re old roads that were initially carved out for horses rather than motorized vehicles.

“Disabled Students' Allowance” sounds nice. I wish for you that the school would provide your housing. Or the government. Have you asked the school if they’re aware of any kind of local disability lodging, or if there’s a donated housing program you can apply for there? I think at one point you may have mentioned that the dorms weren’t particularly handicapped accessible, but maybe the new location will be better? Diapers could be awkward in a dorm, I’m sure. Housing costs at US schools is always similarly unaffordable, typically much higher than $19,000/year! I always rented apartments in the suburbs for better rates myself, but, I’ve been driving and owned a car since age 16, as have most Americans. None of my UK female rellies drive at all. That works when one can just walk a few minutes to a town center as is typically possible in the darling UK, but that isn’t possible in most of the expansive US, particularly in the west.

Well, keep us posted about school :)
 
Bother, I typed a long response and then lost it. Here goes again. I have the utmost sympathy for your problems getting around when you need to use a wheelchair. Fair play to you for insisting on getting transport when you were stuck. I don't often travel by train, or even by our light rail trams, but I do notice the information about lifts at stations being out of order - there is always a long list. Do persist in complaining about the things that go wrong. You have a right to lifts that work, appropriate taxis, and people who are physically there to help. My father-in-law was wheelchair-bound for 7 years after a stroke, in the 1990s, and it used to be a nightmare trying to get a wheelchair accessible taxi to take him to his nursing home after a day out. When one came, it wouldn't have the right equipment, and the driver was clueless or hadn't any experience or possibly both ... I lost all the dressing-gown cords in the house because there were never safety restraints to keep the passenger safe on the journey and we had to improvise - of course I never got any of them back. It was shocking and wearing, and it happened only once in a while, not day after day. Please go on trying to improve life at least for yourself. Any point in you or a friend or acquaintance setting up a network of people engaged in this, and having a forum dedicated to this which sympathetic people, as well as affected people, could follow. A lot to ask as you have your life to lead and with luck your studies to pursue.

I am very keen on Star Trek. Also interested that you mention Rochester - where Charles Dickens lived and where he set his last novel Edwin Drood? I was there once on a kind of brief literary pilgrimage; very fine cathedral; town full of atmosphere.
 
Sorry for the delay, took a bit of a break over the Xmas period.

@snow A generic chronic illness group sounds as though it'd be much better as it would get around the 'being defined by the condition' issue. I have looked around for generic disability groups but can't find any alas. To be fair, I did find the Zoom meeting for the Long Covid support group I'm in helpful so will try and make another. I do find too much Zoom doesn't help with my frustration of being boxed in though. So long as I get out once in a while I'm not too bad though.

It very much depends on the area re wheelchair taxis. There don't seem to be any Uber Access cars anywhere anymore, tried when I was in London in July. Luckily there is a black cab app (Gett) in London which is reliable. Some other cities have black cabs (Manchester and Oxford I know for sure do and Manchester's on the Gett app) so London's not the only place but anywhere without black cabs as the default and it's nigh on impossible to get a wheelchair access taxi. My hope is that my mobility will improve enough at some point that I can fold it and get in a regular car so that even if the fatigue is still an issue, there are still workarounds.

The issue is very much Rochester/Medway in that whilst there will probably be a taxi in London to take me home, there aren't any this end so if say the outbound lift was broken, I'd be pretty stuffed (well, the train company would be obliged to get me one but it'd be at least an hour delay as they'd have to get here). It was the outbound stuff that was the main issue at Birkbeck travel wise (there were of course issues other than travel). I'll do the Disabled Students' Allowance (DSA) thing and even if they can only source a firm for the return trips that's better than nothing. The new chair has allowed me more freedom so the security of knowing I'll be able to get back home at night is good. My main anxiety is if I say, have a lecture at 9am. Even if I were to get on a 6am train there's no guarantee I'd make it in time if the lift was down as add an hour waiting for a taxi that brings it to 7 and add London traffic in rush hour and it's a gamble. That being said, early lectures at Master's level aren't massively common so I don't want to get overly anxious. Plus, the outbound lift generally isn't prone to breaking down.

The main issue with accomodation is that I'd be a part-time student and so don't qualify for all the housing and also, London's just crazy expensive. I'm not surprised at how much they're charging. It does seem nuts though - Whilst it was about ten years ago, I paid around 4.5k for a year in private halls of residence in Cardiff for my final year of my undergrad. That it's around an extra 14.5k for London, even taking inflation into account is pretty mad though. It's a bit of a catch 22 though in that I could hypothetically go to uni somewhere with cheaper rental costs but then I'd have to do a degree full time which I'm just not up to. Plus, living independently would be too much and then there's the question of how accessible the area would be. I think coming to a compromise re travel in London is probably the best solution. Frustratingly there's no option for DSA to help with accomodation, it can cover extra costs if you need an upgraded room or something due to your disability but even the basic ones are beyond my budget! It can only fund specific things rather than a lump sum you can put towards things.

I'm going to a few events at the New College (now called Northeastern University as it's got links with the one in Boston) in the coming months so will be able to see if there are any travel hiccups. Whilst it's not ideal, I suppose the odd hotel stay if there's a big issue will still work out cheaper than staying in accomodation full time.

@abigailbear Thanks! I imagine wheelchair access is a bit of a nightmare in Ireland! Used to go at least once a year as my mother was always keen to go over as my grandmother was from Wexford. Long Covid's stopped all that alas! Hope I can get back there with my mother, we're keen to go back to Galway and I'd love to go back to the festivals in Doolin. Haven't been brave enough to leave Britain yet. This year going to Birmingham was the furthest I've gone in a wheelchair and I've booked to go to a convention in Manchester in November next year.

That's the place! The BBC filmed a recent(ish!) production of Edwin Drood here. It's alright to be honest, it can be a bit rough and ready and whilst Rochester's okay, Medway itself is a bit of a dive. Had quite a pleasant lockdown here as I was still running then. My main frustration nowadays is the inaccessibility of the place - it looks beautiful (by day anyway!) but it's a nightmare getting around. Have to take a very odd route to get to the station and that feels like a rally course! Live near my old school which is weird, I'm reminded of Hotel California and the line about checking out but never leaving! Was hoping I may end up teaching there but university lecturing seems the likely route now.
 
Update: Southeastern trains finally got back to me and didn't really say anything useful but there's a new issue - the lift to the outbound platform is now out of order until the end of the month (which is even more problematic than the other lift!). Essentially no physio for me whilst there are issues!

Have raised it and asked for advice from the Transport For All Group.
 
@Maymay941 Thanks for the words of encouragement!

Transport For All seem to be a great organisation - they're a charity who do lots of campaigning re disability discrimination on transport.

Southeastern have said they will try and find a solution given taxis aren't a reasonable adjustment for me. I think the only solution would probably putting stairlifts in however a) I can't see Southeastern shelling out the money for that and b) I imagine they wouldn't see them as a fallback plan and it would probably delay repair time for the lifts as they'd probably think the stairlifts are fine. That is, of course until they break down!

They're getting even worse in terms of more issues on the track and facilities at stations. It's commonplace for there to be issues and breakdowns now. A bit lost as to what to do regarding university. May explore accommodation options further or even go for the nuclear option of delaying it by yet another year and applying to somewhere with more affordable accomodation. However, Manchester's the only city that's similar accessibility wise to London and that isn't cheap either. However, at a cursory glance it's £10k cheaper and Manchester do a Philosophy MA with a Cognitive Science component. Really want to study at the New College though. I suppose an option could be to defer the New College of the Humanities for a year, also apply to Manchester and if I'm better then go to the NCH and if not go to Manchester. Would also have longer to save. I am losing my mind though and I think the only reason I'm more positive and motivated at the moment is because I've got the option of going back to uni this September and am positive that I'll be able to do that as I'm doing some background reading and that's going well.

I'll have a think. A lot of it depends on my recovery. The treatment's going well but it's a long hall and the neuropathy doesn't seem to be going at all so chances are I'll need a powerchair.
 
@Maymay941 Yeah, am back doing that. Can't do any fingerpicking though but feels amazing to be able to play again.
 
@Sci_Fi_Fan Have you been tested for MS yet? I only ask because I think you’d get much better treatment and options with that diagnosis, rather than just the longhaul diagnosis. Here, MS will pretty easily get you the full extent of all federal, state, and local government assistance. Here in Salt Lake City, if you’re disabled but don’t live close to the train or bus you need, a special mini handicapped bus will come right to your front door then take you to bigger handicap bus/train. Maybe you should try to move here to where the handicap regulations are so much better enforced? Here, if you say your diagnosis is longhaul, a doctor or government agency will likely just laugh at you. So I say, get an MS test. It could get you better assistance, possibly including free or deeply discounted housing.
 
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