Passing out sometimes looks peaceful, but never feels it.
“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.
1) Your staff have not challenged this abuse of the wheelchair space, despite walking past. Please enforce.
2) I reserved that wheelchair space. Why is there no sign in it?
3) The interior door is locked open, so I get noise. Please sort. pic.twitter.com/jcJAuwmZkq
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 clear. Robin Allen QCput 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.
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.
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.
You say wheelchair spaces must be kept free and not used for anything else
Yet your own guard moved this unaccompanied, empty pushchair from my booked wheelchair space into the unbooked one
Baby + parent not even in the coach
1.5 hours later it’s still unchallenged. pic.twitter.com/pJezIcTXOO
it is recommended that passenger train operators provide accessible buses, where reasonably
That appeal didn’t work. Most rail replacement vehicles for both planned and unplanned services are inaccessible. Even if some are, TOCs nearly always don’t know which of the vehicles in use are accessible. With a couple of notable exceptions, TOCs don’t bother to find out, at the time or afterwards, and have made little effort to be in a position to provide accessible replacement vehicles in the future.
TOCs’ failure to do so is a significant issue because it makes travel substantially more difficult for many disabled people. TOCs have traditionally got around this by saying they will provide accessible taxis, but that doesn’t do what is required because:
they have to be booked in advance (no “turn up and go”)
with minor exceptions, all rail replacement vehicles must be accessible
irrespective of whether the disruption is planned or unplanned
it is not legally relevant that the vehicles are paid for by the TOC and not by passengers
Both TOCs AND Bus providers are at risk of criminal prosecution if they run inaccessible vehicles
previous detractors claiming that only services registered with the Traffic Commissioners are subject to the regulations are incorrect.
The only exceptions to these rules are:
Rail Replacement services that are solely long distance (15+ miles between stops) and don’t run to a schedule – which covers hardly any vehicles
Vehicles over 20 years old that are used for “regulated” work for a maximum of 20 days a year
Coaches 15+ years old, though this exception will expire at the end of the year.
So: Train Operating Companies are committing criminal offences when they run inaccessible rail replacement vehicles (with some minimal exceptions.) (Being exceptionally childish, I am inwardly thinking: “I told you so”!)
It isn’t just the TOCs and bus companies that are liable: individual managers who commission or permit inaccessible vehicles are individually liable.
The industry is in an unusual situation given that this has been the law for 20+ years, apparently unrealised by TOCs, the ORR and others. The law is routinely broken; but the DVSA, which is funded and tasked to enforce the accessibility regulations, has never taken any enforcement action against any bus company as they, too, have been operating under the illusion that the current practice is legit. TOCs have not expended any substantial effort to improve the number of accessible RRBs. Tour / private hire coaches aren’t required to be accessible, and there’s no deadline that they will ever have to be. As a result, there quite simply aren’t enough accessible vehicles to provide rail replacement services.
However, TOCs are required by their license to provide rail replacement transport during disruption. What are they going to do? They have to provide rail replacement vehicles for every disruption, but there aren’t enough such accessible vehicles, and they risk prosecution for running inaccessible ones. A difficult situation they find themselves in, but I have little sympathy. If TOCs had made any significant effort to improve the accessibility of vehicles over the last 20 years, they wouldn’t be in this situation. Similarly, if they had complied with the law, which has been around for 20 years and had a staggered introduction to ease the transition.
The ORR have sent all the TOCs the legal advice today. They have solicited comments ahead of re-running the consultation and also re-described the existing requirements on rail replacement services as “provisional”. I bet TOC transport contract managers are having somewhat of a sleepless night…
I believe that disabled pupils should be able to travel on the same buses as everybody else. To do otherwise is segregation. It is damaging to disabled pupils, their peers and society. So school buses should be accessible.
Inaccessible school buses also have a direct impact on wheelchair users, including me. I have found it difficult to book wheelchair accessible taxis around school times because they are all in use for schools contracts to transport disabled kids. I have also found it difficult of an evening because accessible taxi drivers in (say) Harrogate only work during the day. I have also had occasions where brand new buses, bought for school transport, have been used for rail replacement buses on a weekend – and yet are inaccessible to me.
Hansard makes it pretty clear that if there is any one person on a school bus for whom money has been paid for their right to travel, then the school bus must comply with the accessibility regulations. The rail replacement bus I attempted to catch in January was in use in the week as a school bus. North Yorkshire county council contracted said bus services, and sold spare capacity to pupils who aren’t entitled to free school transport. So this brand new bus should have been accessible – but wasn’t.
I complained to North Yorkshire County Council about this on 8th February this year. They took forever to respond, then basically said that they were seeking specialist advice so couldn’t respond. I appealed. They still didn’t provide a definitive response. So come July, I started legal proceedings.
Instant pandemonium ensued. I have been variously accused of:
Rather than work towards running accessible vehicles and thus complying with both the letter and the spirit of the law, the Council have decided to get around the accessibility regulations by stopping charging pupils for spare seats. I think this is reprehensible.
Past practice is that the Council does not set out to procure accessible vehicles for mainstream home to school transport. There is no specific obligation to do so, and
transport needs for entitled pupils requiring accessible vehicles are met through
bespoke arrangements. When services are put out to tender, operators are then free
to offer accessible or non-accessible vehicles with contracts awarded on the basis of
the lowest cost to the Council (subject to meeting minimum quality standards).
The Council have therefore been quite content to run inaccessible buses, thus segregating disabled kids, and have made no effort whatsoever to provide unsegregated accessible school transport. They are subject to the Public Sector Equality Duty under section 149 of the Equality Act 2010, which obliges them to have due regard in all their public functions for the need to:
eliminate discrimination, harassment, victimisation and any other conduct that is prohibited by or under the Equality Act;
advance equality of opportunity between disabled people and non-disabled people; and
foster good relations between disabled people and non-disabled people, including the need to
tackle prejudice, and
I don’t see how unquestioningly segregating disabled kids in special buses, away from their peers, could be considered to comply with this duty.
The Council decided to stop charging anybody for home-to-school transport for this year, taking the financial hit, while lobbying Government for “clarification” or “change” of the law. They will then review the situation at the end of the year, with:
options including permanently waiving charges or ceasing to providing transport for non-entitled mainstream pupils unless and until operators are able to provide accessible vehicles at an affordable cost to the Council.
The Supplier shall ensure that Vehicles shall comply with all relevant requirements of law relating to construction (including the Equality Act 2010 and the Public Service Vehicle Accessibility Regulations 2000), equipment and use and shall ensure that the Vehicles are properly taxed, tested, licensed and insured, and where a Vehicle does not meet any element of these requirements then this would be considered a material breach of Agreement under clause 12.2.
I make no apology for taking action to ensure the Council and its officials complies with its criminal law obligation to ensure school buses are accessible to disabled pupils. I suggest other councils take note.
The Right to Ride
All disabled people are asking for, as the saying goes, is To Boldly Go Where All Others Have Gone Before.
The legislation is there for a reason. We have the Right to Ride on school and rail replacement buses, just as much as anybody else.