“Passing out”

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Mar 022020
 

Passing out sometimes looks peaceful, but never feels it.

Front cover of book The World I Fell Out Of, by Melanie Reid“The World I Fell Out Of”, by Melanie Reid

I read a passage in Melanie Reid’s excellent book that describes the sensation well. I am blessed in that I don’t experience the vomiting as much and my autonomic problems are not caused by spinal injury, and I am usually too hot rather than too cold, but the general visceral experience is absolutely as she describes.

You lose your limbs, your motor function and your autonomic nervous system, which automatically regulates both your blood pressure and your temperature when you are healthy. … Without temperature regulation, you feel permanently cold – that is, until you feel unbelievably hot. And without any controls over blood-pressure regulation, especially if you are as tall as I am, whenever you are raised into a sitting or standing position, your blood rushes into your feet and you pass out. There were times when my bradycardia, low heartbeat, was down to thirty-four beats per minute, enough to call a crash team for a normal person. In the spinal unit such things were unremarked. But fainting was a new discovery for me, a horrid one. It awakened memories of school, where it was always the pretty, delicate girls who used to faint in assembly. As predictable as Victorian heroines, they would fold to the floor with a little sigh during prayers, to general commotion, and lots of attention from the boys, while us roughtie toughtie hockey types in the back row would mutter cynically, ‘That’s Pauline off games’ or ‘I suppose it’s her periods again.’ Of sympathy from us, there was none.

Only now, decades later, I can understand just what those poor girls went through, because I’d turned into the same wan, pathetic creature, turning sheet white and swooning at the slightest provocation. Fainting felt as if death was ripping you out of life and you could feel it happening but could do absolutely nothing about it. There was a dreadful inevitability after I was hoisted out of bed and into a sitting position – visual disturbance, flashing lights, waves of nausea – and then rapidly everything went black with dark green blotches. Voices dimmed and retreated into the distance; I grew hot and claustrophobic; and if no one could tip my wheelchair back in time, and elevate my legs in front of me, I would start moaning involuntarily, flail my arms in distress a bit, and then vomit, mournfully and quite helplessly, into my surgical collar. … Fainting was debilitating and I was so prone to it that in those initial weeks any attempt to get me into a shower chair was ruled out. When they did try, I was a time-consuming failure, fainting and vomiting and fit only to be hoisted back into bed to recover. Shower chairs are minimalist plastic-seated wheelchairs, designed by the devil in a bad mood. I came to hate them with a terrible intensity, for the effort and suffering they brought me. And I still do.

The rest of Melanie Reid’s book also rang great bells with me. Particularly her description of life on the rehabilitation ward, which nearly exactly mirrored my experience on another such; the generally excellent staff stymied by pitifully limited resources and fundamentally undermined by the disproportionate impact of the multiple seemingly small instances of staff cruelty, both unconscious and conscious.

I don’t share some of the other elements of Melanie’s worldview, particularly her non-social-model outlook nor her clear disdain for disability rights activists. But then, not all elements of impairment are social model, and her description of some experiences, situations and reactions were and are painfully reflected in mine, in a way that makes me think: “Somebody Else Gets It.”

I am grateful for the description of passing out, and the precursor symptoms above. I’ve used it today to describe to carers what it’s like.

LNER wheelchair spaces

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Dec 082019
 

I’m getting flak on Twitter for posting this:

The standard arguments are coming out – “parents should be allowed to use it unless required by a wheelchair user” “why didn’t you ask staff / passenger to shift” and then more unpleasant trolling. A near “Line” on Complaining Cripple Bingo – I spot:

    • *Claims disabled person only needs to ask and access obstructions will be removed*
    • “You have psychological issues”
    • “If only you had asked nicely” “You didn’t ask nicely enough”
    • *Provide incorrect or inappropriate adjustment* *Ignore disabled person explaining this*.
    • *Claims you weren’t actually negatively affected because you were able to work round the fail*
    • *Misrepresents what you said to discredit you and the validity of your complaint*

All of that, however, is a distraction. The wheelchair space must be kept clearRobin Allen QC put the argument particularly well, during the Firstbus case:

The case has in some parts being identified as being about competition between the rights of wheelchair users, and travellers with children and buggies. But we say that is not the right way to view it.

We do not say we do not suggest that parents traveling with buggies don’t have the need for assistance, or to be taken into account. We do not suggest that bus companies shouldn’t consider about the general public.

As it is, what we say, and we’ll go through this in detail of course in the submissions, is that we have a particular problem, wheelchair users, Mr. Paulley in particular; and we have been given a particular solution. And we do object to the solution to other problems being grafted on in some way that undermines the strength of the solution which we say parliament has given, through the various bits of legislation which are set out in the case.

Non-disabled people being allowed to occupy the wheelchair space until required seems like a very reasonable preposition. But the reality is different. The constant dread of having to potentially fight to get on the train and into the space; the likely snidey comments from other passengers; objections to me inconveniencing them and so on is too much; especially on top of all the other extra hassle disabled people experience trying to use the railway.

LNER’s policy on this is pretty clear. From their Azuma leaflet:

Reiterated on LNER’s website:

Prams and buggies

We’re very happy for prams to be on our trains, just as long as you make sure they’re folded at all times and stored like any other item of luggage.

Be careful not to put prams in wheelchair spaces as this might be needed later in the journey by another customer.

Sign: "Please keep this space clear for wheelchair users"And in the wheelchair spaces themselves.

LNER policy, as told to me repeatedly by a director, is that when not in use by a disabled person these spaces MUST be kept clear, and that LNER staff MUST enforce this. Sadly, however, LNER staff do not enforce it.

There were 593 seats on the train I caught today, and 2 wheelchair spaces. 2 chances for wheelchair users to get on the train. 0.3% of the chance of a non-wheelchair user.

They are wheelchair spaces. If parents need their own spaces, then I support them in getting them. But please do not abuse the spaces specifically and solely designed and placed for wheelchair users.

Sep 062019
 

In July I attempted to catch the Caledonian Sleeper to Aberdeen. I failed because they hadn’t stowed the upper bunk in the accessible cabin, despite multiple attempts to do so.

In the middle of a discussion with the guard as to what to do (as a disabled person suddenly without accommodation hundreds of miles from home) I was interrupted by Euston Assistance staff member “Paul”. He repeatedly barracked me, in front of another passenger, for failing to meet him at the station mobility assistance meeting point. (I had specified to meet me at the lounge, which I visited for the shower.)

I later complained about his attitude. Network Rail stated that all assistance users must meet at the assistance reception. I found that not credible given that Network Rail offer assistance entering the station – how can somebody get that assistance if they have to register at the assistance point in the station?

Network Rail then accused me of being abusive to the staff member.

I was astonished at this ad-hominem and unjustified attack. I have never been abusive to assistance staff, and I found the allegation abhorrent.

In the course of ensuing conversations, Network Rail accidentally released internal correspondence showing that it was Euston station manager Joe Hendry who had made the allegation:

their recollection was that they were approached by Mr Paulley who was very abusive to the member of staff. … He was told that we weren’t informed and then told our member od staff to go away …
We successful assist approximately 100k customers a year without incident and will not accept abusive behaviour from passengers and after this incident we have reviewed our processes and feel that we need to introduce the option of our staff to have access to body worn cameras to avoid situations like this or indeed just to get a record of what happened form their side.

(Typos in the original)

Joe Hendry, Station Manager, made the above allegations based solely on the account of the staff member involved, against my account and without seeking any third party evidence from e.g. the train manager whose conversation he interrupted.

I threatened libel action. Happily, I had the whole interaction recorded.

Transcript:

> Sleeper Manager: The managers up in Inverness. They say there’s two things they can do. They can can get you booked on the service another day and get you a taxi home.
> Mr Paulley: Taxi home to Wetherby, North Yorkshire?
> Sleeper Manager: Is that’s home for you?
> Mr Paulley: Yeah I came down from Wetherby specifically to do this tonight.
> Sleeper Manager: Oh OK.
> Paul: Mr Paulley?
> Mr Paulley: Yes?
> Paul: I’ve been waiting for.. (unclear)
> Mr Paulley: Yeah, I was up in the First Class Lounge. I was in the First Class Lounge.
> Paul: Yeah that’s OK, but I didn’t know where you are. (unclear)
> Mr Paulley: Yeah, I did tell them that I had booked assistance.
> Paul: (unclear)
> Mr Paulley: I told them that I was, when I phoned up to book assistance, I said “meet me at the first class lounge”.
> Paul: (unclear)
> Mr Paulley: Well that’s not my fault, is it?
> Paul: (unclear)
> Mr Paulley: Yeah. I was where I said I would be when I booked assistance, which was the first class lounge. Now please leave me alone.
> Sleeper Manager: Or we can get you booked…

I don’t see how that can be characterised as “abusive”. Neither could Network Rail’s route manager, who eventually responded:

If this video is an accurate gauge of the tone of all the interactions you had with our staff at Euston on that day,then I do not think it shows evidence of “unprofessional behaviour” by our staff member. I equally do not think it shows evidence of you being “abusive.”
As a result having reviewed the available evidence, I would like to retract and apologise for, the use of the word “abusive” from the earlier response to you by Simon Evans. This descriptor is not supported by the evidence I have seen.

So much for staff needing body-worn cameras to protect them against malicious allegations made by members of the public. I shall continue to record such interactions to protect MYSELF from malicious allegations, particularly when senior station staff such as Mr Hendry swallow and relay staff accusations against contrary accounts and without seeking third party evidence.

Meanwhile the ICO responded on the use of body worn cameras, saying there would need to be a “clear and pressing social need” for such to be justified; and Network Rail’s Data Protection Officer stated there’s no current proposal to introduce such. And rail regulator Office of Rail and Road has considered my

point about Network Rail requesting that passengers report to the assistance reception desk at Euston station when they have booked, or require to book assistance, even though their current DPPP states their assistance is available to help passengers entering any of their managed stations. … As part of the policy approval process we will ensure this details exactly what assistance is available at Euston station and how to get it, thus eliminating the inconsistency in the information you have identified.

I caught the Sleeper again on Monday. I booked assistance to meet me at the shower lounge, which didn’t happen. I therefore went to the registration point, where staff were not expecting me, despite my booking. Staff asked me to wait 20 minutes, which I did whilst 5+ staff hung around and chatted amongst themselves, to the exclusion of passengers waiting for assistance. They eventually asked me to make my own way to the platform, where station staff would assist me onto the train. Station staff didn’t turn up, so the train staff helped me on.

I think the learning points of this are:

  1. Maybe don’t bother booking assistance for the Sleeper at Euston, they are so dilatory it may be easier simply to ignore them and rely on train staff. Booking simply resulted in extra stress, being shouted at and libeled in my case, to no benefit.
  2. Take a camera, record and keep all the things, because some staff evidently make up allegations against passengers and managers unquestioningly accept station staff’s allegations without seeking corroboration.

All extra stress only experienced by disabled people with assistance needs…

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