Only grey background is acceptable. Denunciation of those who inflicted white background on us (including, knowingly, and/or negligently, deaths from epilepsy)

12/Volumes/AZUL CLARO/DRC/NAAG/Add Font size 12 version to post on blog in the wake of my exclusion from a University of Greenwich STAART seminar including an initial response to Melanie Thorley was Thursday 19-7-1-8-2024-7532 Blogger Posts compilation and some commentary.rtf

Re: (1) Only Grey background is acceptable, on safety and Universal design grounds as the Universal Design Default to be applied online. Includes correction of some errors. (2) Any further communication with me by you, directly or indirectly including publishing anything online and/or in hard copy on these subjects will be reported as harassment until such times as default colours on the website of the organisation you are a trustee-director of, namely Achievability, www.achievability.org.uk comply with (1) above. Until this is done, I will block you from email and communicate only via X @adrianwhyatt, with posts linking to one of my Blogger blogs. People can direct message me on X. Any such messages will be copied into one of my blogs and then re-posted. Failure to respond in such a manner to my blog posts and Tweets on X within whatever times I designate as reasonable will be deemed to be agreement with the posts and publicised as such. I note, as well, that increased sensitivity to light, especially bright light, whether or not it leads to a formal diagnosis of visual stress [as in my case] is more common amongst all of the following types of individuals: [1] Blue-eyed people; [2] Those over the age of 40; [3] Those who have other eye conditions, including those that cause red eye [blepharitis, etc]; [4] Those who have eye problems, whether temporarily or permanently, relating to sensitivity to dust; [5] Those suffering from the effects of pollution, especially where it is higher; [6] Those suffering from hay fever; [7] Those suffering from asthma [including seasonal asthma, which I was diagnosed with in 2017, and about which it must be noted that, in terms of asthma as a whole, when it was part of the then European Union 28 member states (the EU28), the UK had the highest death rates per capita from asthma [10 times the rate of the lowest, Lithuania]; [8] Autistics [aka, a less preferred term according to a study done some years ago by the National Autistic Society (NAS), those who are on the autistic spectrum]; “Adders”, aka those having Attention Deficit [with or without] [Hyperactivity] Difference [aka Disorder] [AD[H]D, especially if it persists into adulthood (as it does in over 2/3s of cases diagnosed]; [10] Dyspraxics; [11] Dyslexics; [12] Brain Injury Survivors; [13] Males; [14] People of predominantly or exclusively northern European and most especially partially or exclusively Scandinavian, English, Welsh, Irish or Scottish ethnic origin; [15] Epileptics [typically 1% of the general population is identified as epileptic, but 10% of brain injury survivors and a similar proportion of autistics. Of these risk factors I have all but the last one. It should be no surprise, therefore that when I was tested by a professional at the City University Fight for Sight Clinic, in 2010, in their words, I was the most sensitive to bright white light they had tested in their career. (3) I will, naturally enough, only consider any organisation or individual I contact concerning this, which reasonably has the resources to do so, to have shown that they have started to take my concerns fairly seriously, when they have done likewise, on their websites and other online material. And also advised, in all cases, that those particularly affected by this may be able to get the support of the public authorities, including specialist public authorities tasked with preventing and sanctioning murder, other forms of homicide, torture and degrading treatment and related matters, penally and civilly. (4) Organisations up to and including the global level such as the United Nations, and their component parts, including their members, will be held to a similar standard. After all, you cited the United Nations (UN) Department of Economic and Social Affairs, Sustainable Development Goal (SDG) 10: [to] “Reduce Inequality Within and Among [sic] Countries”. There are various categories of people covered by this, including disabled people and “others”. The UN Convention on the Rights of Persons with Disabilities (UNCPRD) (aka the UN Disability Convention) includes the principle of Universal Design. It also names a number of specific measures, such as the use of braille, sign language and mobility aids. But there is nothing at all covering anything that meets needs that are more common for, or even potentially exclusive to, neurodivergents, such as the use of sans serif ([mini-] hookless and tailless) fonts (let alone as a default (something which the UK Disability Rights Commission (DRC) had as the default, and something to be used in all its communications, from the start of its operations, long before it set up its Neurodiversity Group, the precursor to its Neurodiversity & Autism Action Group. This has not been remedied in any way, shape or form by the UN until now. Its online complaints form (intended mainly for its contractors and potential contractors) remains in a serif font on a bright white background (in a .doc) document. (5) Not all neurodivergents are disabled, most especially those who are general savants, and who are markedly superior in their functioning and abilities than the rest of the population, with no deficits. Some of these would have had absolutely no problems in the pre-electricity and bling it up with bright white eras, but are assaulted by elements of the modern environment. They have no underlying disability, at all, just an above average or below average sensitivity in specific situations or more generally, on a steady and/or fluctuating basis. (6) It and it was for this reason, and the fact that the recognition of the need for low arousal environments as the default, which lasted from ancient Babylon until the 1960s, being reflected in legislation and regulation was no longer recognised because of regulator capture by commercial interests who could make more short-term profit through physically exciting people to buy, often accompanied by high tempo music designed to do precisely that, as well as hotdesking and noisy open plan (rather than cellular and/or “flexiplan” environments [with pull back partitions]) environments which give junior staff less autonomy and senior staff (who normally have their own office), more control over junior employees. All of which has happened despite the fact that, as the late Dave Morris, Senior Disability Advisor (and neurodivergent wheelchair user) to Greater London Mayors Ken Livingstone and Boris Johnson, over 95% of the population prefers something other than black type on a white background (both offline and, tending to feel it more acutely, online). This has happened on the watch, and for profiteering businesses, convenient domination of overwhelmingly neurotypical disabled people with generally rather obvious impairments, though these are far smaller in number. (7) It was because of all this, and more, and a persistent failure to listen, let alone to act and make the necessary changes, that the Autistic Rights Movement United Kingdom (ARMUK) (aka Autistic UK) and others demanded, including in formal consultations on amending the Equality Act, that neurodivergence be recognised as a separate and additional protected characteristic. This was remarked upon in the official response summary to the Equality Act. But, unfortunately no action has been taken to date. (8) I moved to Portugal on Monday, August 17^th2020, in line with medical recommendations for living in a warmer, sunnier climate to help with my early onset osteoporosis, and also with seasonal asthma which I had been diagnosed with about 3 years earlier. However, as many services had moved online, as well as the BSI´s operations, and remained largely in this form or a hybrid form, initially in response to Covid-19 (ironically this was something which we had long requested and been consistently refused, as something meeting the access needs and preferences of many neurodivergents), I have continued to be able to follow much of what has been going on in terms of the UK, including activity to do with the British Standards Institution (BSI) Committees I have been on. (9) With regard to the BSI Committees I have been involved with, the original one was, from 2009, the BS8300/6 Neurodiversity, Cognitive Impairment and Access to the Built Environment Task Force, as indicated below. Slightly later, and initially concurrently their Disability Experts Reference Group (DERG) and its replacement the BSI Accessibility Committee, which is meant to be involved in any and all standards which affect Access Standards, directly or indirectly. This included a meeting, for example, which we held on a new version of ISO 70, the International Standards Organisation´s Guide on Designing Accessible Standards. However, the BS8300/6 was suspended in 2011 due to a lack of funding. Separate to this, however, the Chair appointed to BS8300/6, apparently approached the Department of Health, the lead Department allocated to implement the Autism Act 2009, for funding and a “Design for the Mind” Committee was eventually set up. The Chair did not invite anyone from BS8300/6 to participate in this committee, and in stark contrast to BS8300/6, absolutely no user-run user-led Neurodivergent organisations are listed amongst the list of participants. However, there was one person, an individual who was on it, who seemed to think that the presentation of something on accessibility for neurodivergents on a bright white background, to a local dyslexia association, was just fine! Unfortunately, this local dyslexia association, like almost all organisations I have come across, didn´t seem to understand universal design either, at least as far as online and computer desktop documents are concerned. When another member of BS8300/6 whom I have remained in touch with enquired of the BSI what details they had of BS8300/6 they were unable to supply any, even though the Equality and Human Rights Commission (ECHR) Disability Committee had sent a representative to the meetings. In a clear breach of what we had been told, the BSI Accessibility Committee was not consulted, certainly as a Committee, let alone involved, in the process of commenting on the Draft Publicly Available Specification PAS 6463 “Design for the mind – Neurodiversity and the built environment of 30^th September 2021, produced by B/559_21_0089, only for “Private Circulation” with an unacceptably short comment deadline of 04th November 2021. The final PAS leaves much to be desired, including only the first 11 or so pages of it being in a light blue background colour, apparently due to a printing error in terms of the .pdf (and still not corrected, until now, despite my having pointed this out). I was informed of the existence of this PAS just a couple of days or so before its publication in final form in October 2022, too late to suggest any changes (such as in its failure to mention acquired neurodivergency (via a brain injury for example), as well as some weaknesses in its proposed solutions (no mandatory dimmer-increaser light switches, for example, nor flexiplan spaces), Despite this, it has a clear sense that neurodivergence and neurodiversity are different from disability. Hence, on page 13, for example, in terms of a RIBA Plan of Work it has as one of its objects; “Ensure design team has understanding of neurodiversity and disability.” (10) I will be reporting those key players who supported the introduction of the bright white background as standard to the relevant authorities. (11) I already have done similar things as a True Orthodox Christian activist, including denouncing more than a century of persecution. For a collection of online documents relating to this, seehttps://guardingtime.com/2023/07/08/a-non-definitive-list-of-documents-about-true-orthodox-history/?i=1

(12) I would add that, in addition to having registered some of this persecution and ongoing genocide, dating back to 1917, including with the UN, following up on denunciations which date from fairly early in the life of its predecessor, the League of Nations one of my key interests, in turns of True Orthodox Christianity is the fulfilment of (true) Orthodox Prophecy, especially in the times we are living in, as these Prophecies are, taken together, very much the best guide to what is going on and likely to be happening soon, some of which, if there is repentance, might be avoided. And so, for example, I very much enjoy the Byzantine Prophecy Facebook Group, located at https://www.facebook.com/groups/byzantineprophecy/. Whilst, to repeat, some of which we might be able to avoid, as societies, if there is repentance, much of it will not be avoided, because there has not been full repentance, or indeed, often, any repentance, or, worse still, a worsening of societal sin and fall, reflected too in what individuals do. Amongst these prophecies are the 24 part Anonymous Prophecy of Mount Athos of 1053, parts 1 to 12 of which have been fulfilled completely, with part 12 being “Revolution in India, and expulsion of the English.” Part 13 is “England for the Saxons only”, which is unfolding now, and has included the exit of the UK and Gibraltar from the European Union, and continuing movement towards further isolation. Indeed, much of the latest events are a part of this trend. The prophecy includes the retaking of Constantinople and the manner of this. It ends with the end of the Roman Papacy (we need to remember that the Great [East-West] Schism took place in 1054), one Patriarchate for all of Europe, and the submission of the Latins (which is the West, whether Romanist or Reformed Protestant or other) to the unerring faith of the (True) Orthodox, united under one true Orthodox pastor, amidst rejoicing. This, of course, has to be cross-referenced with other prophecies, amongst with is the one written on a pillar in Constantinople, deciphered just before its fall to the Moslem Ottoman Turks on Tuesday, 29^th May 1453, which predicted that it would be occupied for about 580 years before being restored. And that the restoration would take place in a year in which the (traditional Orthodox) feasts of the Annunciation (25^th March in the Church Calendar and in the Civil Calendar on Mount Athos/7th April in the global civil calendar), co-occurs with Holy Pascha (aka [traditional Orthodox] Easter), which in 2034, less than 581 years after the fall of Constantinople, occurs on Sunday 27^th March/9th April. This will occur as part of the events concerning the restoration of true Orthodox Christian political power, in its most powerful form to date, the preaching of the True Gospel throughout the world, and the conversion of most of the world to it. That also gives a timeline for the access standards and legislation to be cleared up and corrected, if it has not been done already, throughout the world. I would add, that whilst I may not be wise myself, true wisdom only lies in the only True Church, which I am in and, some of which I have communicated here.

The full document I am sending you, of my response, is available online via the following link:

https://drcnaagimplementationandlegacy.blogspot.com/2024/08/only-grey-background-is-acceptable.html

Dear Melanie,

The primary reason for (2), above, is that I have had a number of contacts with, and participated in a number of exchanges with, Achievability, an organisation which the body text of the original invitation email forwarded to me stated you are a trustee-director of, going back to at least 2019, but more likely since 2018 or 2017 or even earlier. These were, for the most part, at any rate, in conjunction with St. Mungo´s Recovery College and/or Waltham Forest Dyslexia Association (WFDA). In these exchanges I made it clear, as a member of the British Standards Institution (BSI) Accessibility Committee. I was also a member of its predecessor, the Disability Expert Reference Group (DERG) (which did not, apparently, before I joined it, have any neurodivergent members or members with an interest in this area. 

Prior to this I had come up with the name, the Autistic Rights Movement (ARM). Gary Mohan, Secretary of the London Autistic Rights Movement (LARM), an IT expert with a joint honours degree in IT and Social Sciences, who had studied the history of computing, pointed out that, in the early days of computing the default background colour on screens to minimise glare was grey. This default background changed to white once commercial interests captured those who made the standards, blinging them up because bright white and other forms of sensory excitation encourages people to buy. Gary had set the laptop I had at the time to brown type on a dark yellow background, reflecting the scotopic sensitivity (/visual stress) tests I had done, initially as part of a Trade Union Health and Safety Reps level 2 course which I did at South Thames College (I took voluntary redundancy from the Pensions Service of the DWP in the middle of the course) at their dyslexia unit. This diagnosed me with visual stress recommending brown type on a dark yellow background, and I was prescribed some glasses with a very slight overlay. He did this free of charge. I would note that these preferences were confirmed with a visual stress diagnosis at the Fight for Sight clinic of City University in 2010, which stayed the same when re-tested.

In 2008 or so the BSI launched its Web Access Standard. Gary had been due to attend its launch, but couldn´t go, and so, at the last minute, I agreed to go as his substitute. An attendee, who appeared to be partially sighted, and doubtless noticing, like me, that all of the people demonstrating their use of the new Accessibility Standard, appeared to be blind or partially sighted people, asked what was being done in the standard to resolve clashes between different access needs. The standard stated that contrast online on screens was a minimum 25% greater than contrast off-line. Skye was amongst the sponsors of the event.

It needs to be noted in this respect that, at least a minority of those classified as blind or partially sighted benefit from a very strong contrast between (normally large), often black, type on a bright, (potentially, and more often than not, in practice, actually,) white background. 

This high contrast being the opposite of the low contrast, especially on electronic screens, above all those which are large, which many, if not most, neurodivergents, and other more than averagely visually sensitive [at least under some circumstances] people and other more than averagely visually sensitive [at least under some circumstances], people, must have to be able to use them comfortably, if at all, for long periods, or even, especially those who have a history of epilepsy and related conditions, trigger a possibly permanently damaging episode and/or even a fatal attack which many. 

The absurd and blatantly ignorant, if not outright dishonest, response from the Chair of the BSI Committee that had written the Standard, and who was also chairing the meeting was that clashes of access needs wasn´t a problem. My response to that was – oh yes it was, pointing out that there had been no involvement of neurodivergent people or our organisations in creating this standard, and that it needed to be on the basis of universal design, with the default design being low contrast on a grey background, and that this was a breach of the UN Disability Convention requirement for universal design. I was then accused by the Chair of wanting to destroy the graphic design industry!

Over coffee after the event, the Chair then said to me that Microsoft, Apple and Facebook would never agree to change the default background from white to grey. I shot back that other things had been forced on them, and this would be too. The Chair then opined: “Your mad.”

I was able to experiment, highly successfully, with using universal design grey backgrounds on courses where I had to do presentations, and had even changed the settings of all the computers to a universal design setting at Cool Tan Arts, where I was a long-term volunteer, before this. This also applied when I presented various subjects as a Peer Trainer for West London Mental Health NHS Trust Recovery Hub (now the West London NHS Trust Recovery College). And also, somewhat later, though it overlapped, for St. Mungo´s Recovery College courses. It also became clear for this, in terms of setting up a relatively simple website it was possible to use Wordpress and one of their basic templates.

The St. Mungo´s Recovery College courses, by now moved online into what they dubbed their Digital Recovery College, also overlapped somewhat with courses I started in August 2020 in Portuguese as a non-maternal language [fairly literal translation] [“for non-Native Speakers” or “for Foreigners” would be more idiomatic translations], in the University of Coimbra Faculty of Arts. These university courses took precedence. I told the University authorities what I needed and supplied them with the medical evidence. Everything seemed to go fine, with all of the lecturers meeting my requests, until September of 2021 when I was told that the report done on me (which I have never been shown) did not, so I have been told, include any recommendation that I needed presentations to be in another colour.

Ironically the biggest problem I had at the time was with some of the online presentations of the monthly Waltham Forest Dyslexia Association (WFDA) being on a white background (made much worse when I had some blepharitis attacks, which can flare up without warning, at times, and for which there is also often no real cure). This included one presentation by a person who was an access specialist! And this despite promises that WFDA would ensure that this did not happen, some presentations continued to be on a bright white background (when I noted this, and commented on it in meetings, politely, I was the one who was criticised, fiercely, not the person giving the presentation). But this person did tip us all off that the BSI was preparing a Neurodiversity and Access to the Built Environment Publicly Available Specification (PAS) standard. I note also, in passing, that when I stated, publicly, in a statement in a class delivered at St. Mungo´s Recovery College some years ago now, that I was a True Orthodox Christian, and I corrected this person for referring to me as an “Orthodox Christian”, and they then said “same thing”, I pointed out that we “True Orthodox Christians” have been continuously discriminated against, harassed, and persecuted even unto death and martyrdom.

In this context, it should be noted that a fellow member of the BSI Neurodiversity, Cognitive Impairment and Access to the Built Environment Task Force (constituted in 2009 and suspended in 2011 (though we were never formally notified of this) (due to a lack of funding, despite having had backing from the EHRC Disability Committee, who sent a representative to the two meetings we did have), when they inquired, was unable to find any records of themselves and their participation and stated that, in their view, we had been “Shanghaied” by the Chair of the Design for the Mind Committee, who had also been the Chair (appointed by the BSI) of the Neuro-Diversity, Cognitive Impairment and Access to the Built Environment Task Force.

I was never able to get a grey background Universal Design basic design default for online (or off-line design standards), something I was never able to get through the BSI Accessibility Committee, including when we had to comment on the ISO 70, the International Standards Organisation´s Standard on designing Accessible Standards. The prime reason for this, even on a national level, was that I was the only neurodivergent person there, pushing for neurodivergent friendly defaults. British Standards are on a consensus basis, which tends to mean they are very close to the lowest common denominator in practice. The submissions of national committees are put to a majority vote when it comes to European and International Standards, something which the BSI fails to do for national standards.

When it came to the “Design for the Mind” initiative, and the creation of the 2022 Publicly Available Specification (PAS) on Neurodiversity and Access to the Built Environment, though the Accessibility Committee is meant to be involved in the creation of all standards to do with Accessibility, there was no consultation with the Committee. Nor was the Neurodiversity, Cognitive Impairment and Access to the Built Environment Task Force revived, as it logically should have been. Nor was there any acknowledgment of any of the earlier work I and others had been involved in, whatsoever. Though the point I made in the WFDA meeting, checked out with epilepsy activists, that some people do suffer fatal epilepsy attacks from visual stress (including bright white backgrounds, and not just strong bright white lights in other contexts) did make it into this standard, as did one other important recommendation, namely that Access Committees need to consist of a mixture of Neurodivergents (and Neurodivergency Experts) and Disabled People, other than this, it is, unsurprisingly, very poor (open plan examples from the sponsors which include, in every instance, what look like bright overhead lights (and no requirement for dimmer-increaser switches to be mandatory), not helped by the consensus system they have and sponsors like the BBC and Transport for London wanting to indulge in neurowashing of their poor, actually neuro-hostile, environments. 

We had got as far as we could get, in reality, using the disability paradigm, with many things being worse, e.g. in terms of colour schemes, etc, than they had ever been, all the way back to Roman times and beyond, from when the bright white whitewashed interiors tended to come, along with noisy open plan backgrounds and bright, often undimmable overhead lights. Indeed, Michael Portillo´s railway journeys nicely illustrate how much more neurodivergent-friendly Victorian trains were (and even prisons and paper).

It had become increasingly obvious to reasonably knowledgeable and experience activists that, first, not all neurodivergents would meet the legal standards for disability under domestic legislation and jurisprudence, never mind European, international and global legislation and jurisprudence. And, secondly, that some of the reasons that we were being discriminated against were nothing to do with disability.

To put it simply, but bluntly, being hyper or hypo sensitive is not a superior or inferior ability to do anything. Unlike, potentially, some intrinsic biological (and/or post-trauma) significantly above average difficulties with spelling, writing, coordination, memory, or whatever. But, they are grounds on which people do experience very real discrimination. There´s also the phenomenon of many, if not most, people with high-functioning autism, including Asperger´s Syndrome, having a way above average long-term memory, but not being believed because, due to hypersensitivity, they have very little eye contact, not being believed, and therefore being discriminated against, because of a combination of the poorer memory of most of the rest of the population and factually erroneous but highly prevalent stereotypes about people who can´t comfortably maintain eye contact at close to average levels, being shifty. In fact research suggests they are if anything, on average much more honest than the general population. In this case discrimination is happening because of a combination of areas of superior ability, and what might be argued to be an area of disability, but, equally, just an area of increased sensitivity which has nothing to do with any underlying area of disability. Either way, the discrimination that results does not neatly fit into the typically purely impairment-based deficit model of disability.

What both of these things do fit into, however, are certain models of neurodivergence.

What arises out of this is that it is essential that the events I describe below, especially on my successful use of recourse to anti-torture authorities (and their support for me) here in Portugal, against the University of Coimbra (Faculty of Arts and Humanities [Liberal Translation] [Letters would be a much more Literal Translation]) in overcoming a potentially extremely and lastingly physically painful failure to meet my access needs through applying real (rather than fake) Universal Design standards to minimise stress which have their roots in the 1950s, namely low contrast online screens, which were then, as Gary points out, the default on mainframes. 

I will not respond to anything you have to say, until you have put your own house in order at Achievability.

I will also not consider my concerns fully met unless and until you put your own house in order at Achievability as far as the default background colour is concerned. 

I will not consider my concerns, which I am going to raise with the University of Greenwich, to have been fully met, unless and until they have done likewise.

Yours Sincerely

Adrian Whyatt

---------- Forwarded message ---------
De: Adrian Whyatt <adriandeanwhyatt3@gmail.com>
Date: sexta, 2/08/2024 à(s) 02:57
Subject: Re: My reply to this can be accessed here. See below [EXTERNAL] Re: Neurodiversity is not disability, it is a separate category. Not all neurodivergents are disabled. And even many of those who might, at a stretch, be seen as disabled by others, especially professionals of some sort, often don't iden...
To: Melanie Thorley <M.Thorley@greenwich.ac.uk>

Dear Melanie,

My reply, in line with this tweet and Facebook post, to which I have linked it, can be accessed here. Just follow the links. The matter can be peacefully resolved by my delivering an online seminar to you (at no charge, I might add, I´ve never been in it for the money). There is an earlier quoted tweet on, inter alia, how I used the threat of anti-torture legislation against the University of Coimbra, here in Portugal, to force them to change screens in classes I was attending to a grey background (in line with real universal design (an interest of mine as someone who has been on the British Standards Institution (BSI) Accessibility Committee (inter alia, after a very tardy report had ignored my visual stress in its recommendations (when checking, I found the documents had been sent twice showing my diagnosis and assessment of this). Prior to this, with nothing but my own recommendations to go on, everything had been fine. Then I came up with some refusals. This led to a row on one occasion when a Professor threatened me with the police in front of the whole class when I openly accused her of discrimination. I told her that if she had read the email I had copied into her she would see that I had already contacted two types of police about the situation. She immediately found an alternative solution. In her case doing everything offline. It was another Professor, very appropriately named Guerra (means War) (and the University as a whole) who caved when I informed them that the anti-torture authorities had sent me an email (with an attached letter), telling me to get back to them if my needs were still not being met. Noone has the right to inflict any continuous physical pain on anyone:

See this on X: And when I told them about this in factual posts at an online webinar on #neurodivergence the same day, the @UniofGreenwich @GRE_STAART director @DrMelanieThorley removed me from the webinar without warning #anti-#torture https://drcnaagimplementationandlegacy.blogspot.com/2024/08/my-exclusion-from-university-of.html

Best wishes

Adrian

Melanie Thorley <M.Thorley@greenwich.ac.uk> escreveu (quinta, 1/08/2024 à(s) 18:04):

Text available at the following link: 

https://drcnaagimplementationandlegacy.blogspot.com/2024/08/my-exclusion-from-university-of.html

RE: Initial Response to Melanie Thorley as detailed above was...Workable solutions to achieve maximum neurodivergent inclusion in accordance with United Nations Sustainable Development Goals, especially SDG10 - To Reduce Inequality Within and Among Countries by ending "Neurowashing" and Potentially Fatal and/or physically painful Torture Against Neurodivergent and other more sensitive and/or exposed people contrary to the Torture prevention Conventions and other global, international, Continental (including pan-European and European), national, regional and local laws, regulations, codes of practice, torts and contracts, and internal regulations and procedures, correctly interpreted, building on this Introduction to and Presentation of United Kingdom of Great Britain and Northern Ireland - UKGBNI- Disability Rights Commission - DRC- Neurodiversity & Autism Action Group - NAAG - Majority Report (passed by 9 votes to 7) - Neurodiversity, Equality and Human Rights Report: The Majority is the Truth Plus One - A Neurodiverse Contribution to the Overall Equality and Human Rights Agenda as well as the Rights of Neurodiverse People. This includes a first section of this report, to which Jo Todd’s Report is added, edited by Adrian Whyatt, Member, Disability Rights Commission - DRC- Neurodiversity & Autism Action Group - NAAG - in his official capacity as a Member of that Group - Including a Statement on why this Report is Necessary - from 2007 - with some updated commentary - to Monday July 16th 2024 traditional Orthodox Christian Calendar and Civil Calendar on Mount Athos Greece, July 29th 2024 (global civil calendar in use elsewhere), 7532 Year from Adam and the Creation of the World (Eastern Roman (aka Byzantine) Empire and traditional Orthodox Church Dating 

Dear Melanie,

Before responding to your email below, I think it is most important that I include the text of an email I wrote, forwarding your email to another, very long-term, neurodivergent activist. 

I am including the content, but not their name, as I have not yet sought their permission to do so.

Adrian Whyatt <adriandeanwhyatt3@gmail.com> escreveu (quarta, 31/07/2024 à(s) 15:33):

“We´ll see how this goes...Didn´t meet the colour test on their enrolment materials (from Waltham Forest Dyslexia Association (WFDA). Citing anti-torture legislation is how I overcame an inadequate access and reasonable adjustments report to force the University of Coimbra to meet my needs.

But, she does link progress and monitoring on the enrolment form, to the UN Sustainable Development Goal 10 (out of 17): "To reduce inequality within and among countries (sic)"”

I would now like to respond to your email in the light of this. I will respond to it point-by-point:

Good evening Adrian.

“I do not know who you are,”

Please see the document, very slightly modified, I updated with som subsequent developments since 2007, prior to the webinar you held yesterday to see, in part at least, who I am. But, perhaps to put it quite briefly, I am a True Orthodox Christian, neurodivergent and brain injury survivor activist and have also been active in a few other areas (such as in support of the Palestinian people, and against abortion). I will be 59 years old on 06^th August 2024, am a dual Canadian-UK citizen resident in central Portugal, in the Coimbra area, since 2020. I arrived here on Monday, 17^th August 2020.

I´m happy to provide more information, but that will do for now.”

“or what you do,” 

Largely explained by the above, and you can get a flavour of it from what is written below.

Again, if you want more information, write to me.

“the reason you were removed from the workshop yesterday was because of content you posted in the chat. The STAART Workshops are a safe space - both physically and psychologically - and your words upset a number of our other attendees.”

My response: my words were all perfectly reasonable and factually based, as best I am able. Except where I specifically state something is my own personal opinion. It is wholly unreasonable for people to get upset simply because other people have stated inconvenient facts, or defensible opinions, that they don´t like, or feel challenge their ideas. In just about any context. Universities above all. If any of the other attendees were upset by what I said, then they should have said so, in the chat. I received no such message. I should also have been, at a minimum, told explicitly that we were not allowed to express facts or opinions that might contradict what other people think.

I have been to thousands of other webinars and meetings down the decades, and have never previously been excluded from any of them for stating facts or opinions.

It would seem to be that you are extremely intolerant of facts and opinions that challenge or contradict your own in any way. 

“From your email, it is apparent you nothing about myself nor STAART.”

Why would I? I came across your email in an old email account I only occasionally access (some organisations do not bother updating, it seems, despite being told what one´s new email is). I explored the links on your form, and that was all the time I reasonably had. 

If you´re so concerned with wrapping students in cotton wool, then you should, at the very least, state exactly how you define this in the signature area of your emails. I discovered, after quite a bit of searching, a long list of how people are supposed to interact with STAART. This included banning “anti-vaccine” posts, whilst failing to balance this with the recognition that there has been such a thing as vaccine damage benefit. I have found that your X/Twitter link didn´t work.

“The majority of neurodivergent students and staff I work with, at Greenwich and elsewhere,  embrace their identities.”

This does NOT mean that they all identify as disabled people, by any means (based on the above statement alone).

“Our workshop did not have neurodiversity in the title or the content, we were addressing myths surrounding neurodivergence.”

This is semantics.

“If neurodivergence was not classified as a disability, autistic and dyslexic people would not be able to access Disabled Students' Allowances, Access to Work, Personal Independence Payments, etc.”

I have never stated that many, indeed most, neurodivergent people aren´t disabled in some way. But, not all meet the thresholds required to receive the benefits and aids you describe above. This was openly stated in the feedback by someone who expressed uncertainty that they were sufficiently affected by neurodivergenceto qualify for any support.

Also, no mention of other types of neurodivergence in the above statement.

I will deal more with this later, below.

“Regards

Melanie”

The first thing I will say about the email I forwarded, is that the individual to whom I have addressed this identifies as neurodivergent, but does not identify as disabled because of his neurodivergence. They do, now that they are getting older, use a mobility scooter, and also identify that as a disability.

This person was identified and diagnosed, well into adult life, with Asperger´s Syndrome. 

In its submission, for which it had unanimous support from its executive, The Autistic Rights Movement United Kingdom (ARMUK) which was to become Autistic UK and its member organisations, to consultations on revising the Equality Act, as was noted in the official summation of responses to it, submitted thatneurodivergence needs to be an additional protected characteristic. 

I would add to this that, a few years on from this, I was active in the Unite the Union West London Community Branch, the largest Community Branch in the country with over 800 members at the time. A member proposed a motion to have Trade Union Activity added as an additional protected characteristic under the Equality Act. I suggested an amendment to include neurodivergence as well. This was unanimously accepted.

The British Standards´ Institution 2022 Publicly Available Specification (PAS) on Neurodiversity and Access to the Built Environment states that access committees for new buildings (and the renovation of old ones where required) should include a combination of neurodivergent people and disabled people.

Note that they are marked out as different categories.

It has always, I am afraid, been my experience that neurodivergent activists, who invented the term, after all, lead, and academics, for the most part, follow.

So, what would be a fair solution to this situation, which would ensure that we can make progress to a more inclusive world?

For me to do a presentation on getting our rights as neurodivergent people enforced, creating genuinely accessible universal design, and being able to cope with facts and opinions we or others might find challenging.

Best wishes,

Adrian Whyatt

---------- Forwarded message ---------
De: Melanie Thorley <M.Thorley@greenwich.ac.uk>
Date: quinta, 1/08/2024 à(s) 18:04
Subject: Re: [EXTERNAL] Re: Neurodiversity is not disability, it is a separate category. Not all neurodivergents are disabled. And even many of those who might, at a stretch, be seen as disabled by others, especially professionals of some sort, often don't iden...
To: Adrian Whyatt <adriandeanwhyatt3@gmail.com>

Good evening Adrian.

I do not know who you are, or what you do, the reason you were removed from the workshop yesterday was because of content you posted in the chat. The STAART Workshops are a safe space - both physically and psychologically - and your words upset a number of our other attendees. From your email, it is apparent you nothing about myself nor STAART. The majority of neurodivergent students and staff I work with, at Greenwich and elsewhere,  embrace their identities.

Our workshop did not have neurodiversity in the title or the content, we were addressing myths surrounding neurodivergence. If neurodivergence was not classified as a disability, autistic and dyslexic people would not be able to access Disabled Students' Allowances, Access to Work, Personal Independence Payments, etc. 

Regards

Melanie

From: Adrian Whyatt <adriandeanwhyatt3@gmail.com>
Sent: Wednesday, July 31, 2024 15:24
To: Melanie Thorley <M.Thorley@greenwich.ac.uk>
Subject: [EXTERNAL] Re: Neurodiversity is not disability, it is a separate category. Not all neurodivergents are disabled. And even many of those who might, at a stretch, be seen as disabled by others, especially professionals of some sort, often don't identify...

 

This message originated from outside the University. Treat links and attachments with caution.

Re: Neurodiversity is not disability, it is a separate category. Not all neurodivergents are disabled. And even many of those who might, at a stretch, be seen as disabled by others, especially professionals of some sort, often don't identify as disabled, and often are not considered as disabled by the general public, and sometimes the legal system and other systems in operation, including socially. Was STAART Workshop: Mythbusting Neurodivergence link to attend

It´s time to use the #anti-#torture #conventions and legislation to stop damaging and even fatal #sensory#overload. #Access #standards are wholly inadequate. Successful use example. 

DRCNAAGIMPLEMENTATIONANDLEGACY.BLOGSPOT.COM

12/Volumes/AZUL CLARO/DRC/NAAG/version to post on blog was Tuesday 17-30-2024-7532 Blogger Posts compilation and some commentary.rtf Fatal sensory overload prevention and enforcement Preventing the death and injury and pain of people, especially...

---------- Forwarded message ---------
De: Melanie Thorley <M.Thorley@greenwich.ac.uk>
Date: quarta, 31/07/2024 à(s) 10:42
Subject: STAART Workshop: Mythbusting Neurodivergence link to attend
To:

Good morning and we hope you are well. Many thanks for signing up for our Mythbusting Neurodivergence workshop this afternoon. As always, we will be using Mentimeter software which will enable you to participate in the activities, with the added bonus of requesting a copy of the presentation slides once the workshop is finished. We have over 100 people booked to attend which is very exciting, though a little bit daunting.

If you are a University of Greenwich student or staff, we suggest you log on at 4.15 in case you have to go through the multi factor authentication (MFA). For everyone else, we suggest logging on at 4.20 to ensure we can start on time.

We hope you find the workshop both interesting and enjoyable.

Here is the link to join the workshop: https://teams.microsoft.com/l/meetup-join/19%3ameeting_YmVkYWE3ZjgtOTM2YS00NWExLTk5YmUtNTMwYzE1MDZkNGI2%40thread.v2/0?context=%7b%22Tid%22%3a%223516f40a-5ae9-4956-bbab-395162e589ce%22%2c%22Oid%22%3a%22455d2a9a-c2f5-48fa-9529-8feae63ba030%22%7d

Melanie, Shona and Fiona 

 

Dr Melanie Thorley BA, MA, MSc, EdD

pronouns she/her

How to pronounce my name - Melanie Thorley's NameDrop 

 

STAART Manager

Information, Advice and Participation Services - IAPS

Student and Academic Services

 

If you are a current University of Greenwich student, the Digital Student Centre is available to provide you with useful information and answers to your queries. You can also submit an enquiry if you have a query that cannot be resolved using the information available on AskUoG

 

 

Empowering our students to achieve their potential. 

 

University of Greenwich

 

Staff Mental Health Champion

Peer Mental health Champion

 

Winner - Student Support award 2020 and 2021 (Student-Led Awards)

Winner - Good Health and Wellbeing Award 2021 (Levelling Up Awards)

 

Trustee and Director of AchieveAbility

 

Co-Lead SE England     National Association of Disabled Staff Networks (NADSN)

NADSN Liaison Officer  University of Greenwich Disabled Staff Community 

 

 

07931 226599

m.thorley@gre.ac.uk

 

 

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University of Greenwich, a charity and company limited by guarantee, registered in England (reg no. 986729). Registered Office: Old Royal Naval College, Park Row, Greenwich SE10 9LS.

I want to make several brief observations and will later follow this up, as and when I have time, with a more comprehensive treatment of the subject:

(1) A note on what the DRC NAAG was, and its history and pre-history.

The DRC was set up in the wake of the 1995 Disability Rights Act. It was noted, eventually, that although it was, theoretically, an organisation in which all disabled people were equal and intending to meet the needs of all types of disabled people, catering for all impairments and differences, in practice it was dominated by people higher up in "the hierarchy of impairments", epitomised by symbols such as wheelchairs, white sticks and other things which are much more obvious, tending to ignore less apparent and invisible impairments and disabilities. 

To try to address this, the DRC established its first Action Groups, which were set up with the remit of taking action to help groups of disabled people who were historically and currently underrepresented in terms of organisations specialising in disability, both those not led and controlled by disabled people and those that were led and controlled by disabled people, namely the DRC Mental Health Action Group and the DRC Learning Disability Action Group. However, they had, characteristically, left out what is, numerically, the biggest group which comes within their remit, namely neurodivergents.

In the meantime, despite a complete lack of funding from state or charitable sources for pan-Neurodivergent organisations, to such an extent that pan-Neurodivergent user-led user-run organisations never had so much as a permanent part-time worker funded for them, activists emerged and made demands for proper inclusion.  

Finally, at the DRC AGM, held in 2003 in Newcastle, in a classic direct action, leading activist Colin Revell circumvented a ban on him complaining and interacting with the DRC, by attending the DRC AGM as the (voluntary) personal assistant for Russell Stronach, a fellow activist who lives close to Newcastle, and asked when a Neurodiversity Action Group would be set up? The DRC agreed to set up the DRC Neurodiversity Group, from which a recommendation then emerged, in 2005, to set up an Action Group, which became the DRC Neurodiversity & Autism Action Group.

(2) A Brief History of the DRC Neurodiversity and Autism Action Group (NAAG) up until the compilation of this report. The addition of the word "and Autism" came about as a result of lobbying of the National Autistic Society (NAS), which has always been parent and carer-led, never autistic-led which stated its research of its users showed that not all of them identified as neurodivergent. 

A clear majority of the members of NAAG were Neurodivergent, and also members and representatives of Neurodivergent organisations and/or Disabled People´s Organisations (DPOs), up to and including a Trustee of the largest representative pan-disability organisation in the UK, The Royal Association for Disability and Rehabilitation (RADAR), namely me.

As far as I have been able to determine, to date, this is the only time, anywhere in the world, in which an official state human rights body has set up such a group, dominated by neurodivergent people and their organisations.

However, there was a clear attempt to sideline and marginalise more representative (and generally more radical) members of the Neurodivergent and disabled people´s movement.

This went all the way through to the commissioning of a final report by Jo Todd, not a representative of a user-led organisation, though a past trustee of at least one.

The appointed Chair of NAAG, Bob Niven, the DRC CEO, who came out as dyspraxic in the very last meeting we had, did say, as he was bound to, that I had a right to write a minority report. I reminded him that I also had a right to call a vote on my report, and if the majority agreed to it, it would then become the Majority Report.

(3) How this report became the NAAG majority report.

Jo Todd wrote her report, a copy of the text of which is appended below (minus illustrations and pictures). One part of my supplementary report, agreed with the support of the user-led Mental Health Action Group (MHAG), for whom Colin Revell took the lead, not to be confused with the DRC´s MHAG, which it long predates, the rest of the Majority Report being also agreed with the user-led Politics of Autism Group additionally (which later became the Autistic Rights Movement (ARM), from which the Autistic Rights Movement United Kingdom (ARMUK) eventually span off), the stand alone Disabled People´s Charter of Essential Needs to be Met, was accepted unanimously by NAAG, and, because of its relevance for disabled people as a whole, by Baroness Jane Campbell of Surbiton, Chair of the DRC, by the DRC as a whole, thus extending the 12 needs of Independent Living greatly, amplifying the 12 needs by adding some essential details to make them more effective, such as:

8. Equal opportunities, to which was added, and guaranteed employment (without which this right is ineffective and is just a neoliberal con). 

10. Advocacy, which was amplified to include explicitly: a. Independent Advocacy; b. Self-advocacy; c. Peer Advocacy; d. Citizen advocacy; e. Legal advocacy; 

12. Appropriate and accessible health and social care provision 

To which the Charter says we need explicitly to add: "Including diagnosis, treatment and support, which includes appropriate Mental Health services and treatment taking into account the nature of individuals disabilities including their diagnoses and how they are affected."

To this are added 9 additional needs of Independent Living:

13. Coaching

14. Individual style of social interaction accepted and supported.

15. Fully accessible legal systems, this includes judicial civil and criminal systems.  This includes mediation and arbitration systems, comment, liaison and complaint systems, tribunals and all other forums] 

16. Fully accessible police and law enforcement system. 

17. Effective and Fully Funded Access to all stages of the legal system from informal dispute resolution onwards. As part of this a Disability Courts structure.

18. Extension of and effective enforcement of the Disability Equality Duty (DED) throughout the legal system, as part of its extension through all sectors of society: public, private, voluntary and mixed. Including all legal and law enforcement processes. This includes private security guards. And compulsory and comprehensive training in the DED for all.

19. The Right to have religious, spiritual, other belief and cultural needs met in full. 

20. Court decisions to be made fully compliant with the Disability Discrimination Act (DDA). All participants in the legal system, including judges, to be held fully and personally liable under the DDA and other legislation for any breaches of disabled people’s rights. To support this they are to have unlimited scope to order disabled people’s needs to be met.

21. The right to an Individually Controlled Environment (ICE). This includes measures to ensure that a person can avoid sensory overload.

Hence, in total:

Disabled Peoples' Charter for Essential Needs to be Fully Met

1.  Full accessible environment.

2.  Full accessible transport system.

3.  Technical aids, equipment and assistive technology.

4.  Accessible housing, including funding for adaptation.  

5.  Personal assistants.

6.  Inclusive education and training.

7.  Adequate income.

8.  Equal opportunities and guaranteed employment.

9.  Appropriate accessible information.

10. Advocacy

a. Independent Advocacy.

b. Self-advocacy

c. Peer Advocacy

d. Citizen advocacy

e. Legal advocacy

 

11. Counselling.

12. Appropriate and accessible health and social care provision [. Add]: Including diagnosis, treatment and support, which includes appropriate Mental Health services and treatment taking into account the nature of individuals disabilities including their diagnoses and how they are affected.

13. Coaching

14. Individual style of social interaction accepted and supported.

15. Fully accessible legal systems, this includes judicial civil and criminal systems.  This includes mediation and arbitration systems, comment, liaison and complaint systems, tribunals and all other forums] 

16. Fully accessible police and law enforcement system. 

17. Effective and Fully Funded Access to all stages of the legal system from informal dispute resolution onwards. As part of this a Disability Courts structure.

18. Extension of and effective enforcement of the Disability Equality Duty (DED) throughout the legal system, as part of its extension through all sectors of society: public, private, voluntary and mixed. Including all legal and law enforcement processes. This includes private security guards. And compulsory and comprehensive training in the DED for all.

19. The Right to have religious, spiritual, other belief and cultural needs met in full. 

20. Court decisions to be made fully compliant with the Disability Discrimination Act (DDA). All participants in the legal system, including judges, to be held fully and personally liable under the DDA and other legislation for any breaches of disabled people’s rights. To support this they are to have unlimited scope to order disabled people’s needs to be met.

21. The right to an Individually Controlled Environment (ICE). This includes measures to ensure that a person can avoid sensory overload.

 

This Charter is based upon the Southampton Centre for Independent Living’s 12 Needs of Independent Living, with additions by the Mental Health Action Group, based in Hull and the East Riding of Yorkshire, in 2007. 

 

Notes on MHAG and its concerns

 

1. The Disability Rights Commission (DRC) established a DRC Neurodiversity Group followed by the DRC Neurodiversity & Autism Action Group following effective lobbying at the DRC AGM in 2003 by Mr Colin Revell, MHAG volunteer, and NAS Councillor, Mr Russell Stronach, as well as concerted and continuous pressure from many others, notably his fellow NAS Councillors Adrian Whyatt (mainly in his capacity as Co-Chair of DANDA: Developmental Adult Neuro-Diversity Association, but also through his involvement in other organisations) and Larry Arnold (who is also an NAS Board member). This is to be included in part of its final report of September 2007 before the DRC is replaced by the CEHR. 

 

2. They have also expressed their concern that there needs to be more emphasis on the Mental Health needs of neurodiverse people. They point out that, for example, the minimum standard set by the Royal College of Psychiatry on it. Also, in the light of the Piers Boldruc case and many others, more support against misdiagnosis (e.g. schizophrenia for Asperger’s Syndrome and depression for (especially developmental) dyspraxia. 

 

3. In addition, it should be noted that MHAG was established before the DRC set up its Mental Health Action Group. It lobbied the DRC to set up a Mental Health Action Group and one of its members has served on that group.

 

4. MHAG prefers the term “Inclusive Living” to “Independent Living”. This is also in line with best practice. MHAG prefers “Centres of Inclusive Living” to Centres for Independent Living, just as it prefers Organisations of Disabled People to Organisations for Disabled People.

 

5. Adrian Whyatt asserts copyright to the term “World Centre of Inclusive Living” (WCIL). WCIL requires all stakeholders to be included and to sign off on policies, including access needs. It also requires that representation of disabled people needs to be reasonably proportionate according to disability type etc. Adrian Whyatt immediately gives copyleft to MHAG to set up WCIL in its offices in Hull. Likewise for United Kingdom Centre of Inclusive Living (UKCIL), etc. 

 

6. MHAG wants to ensure that the incorrect popular stereotypes about disability being mainly visible and obvious (apparent impairmentism) is corrected.

 

7. MHAG and WCIL are determined that Inclusive Living remains under the control of truly representative groups of disabled people and is not hijacked and distorted by other groups, especially as disabled people as a whole are the most excluded  

(4) The NAAG work was carried forward into the DRC successor organisation the Equality and Human Rights Commission (EHRC)´s Disability Committee (which was part of the transition arrangements to carry on the work of the DRC, eventually being disbanded when the EHRC had been considered to be ready to mainstream disability entirely), including work in 2008 on website accessibility with CABE (The Centre on Access to the Built Environment), including specifically on improving neurodivergent accessibility for its website).

This, in turn, led to a recommendation to create, under the auspices of the British Standards Institution (BSI) a "Neurodiversity, Cognitive Impairment and Access to the Built Environment" Task Force, with a view, especially, to modifying the BS8300 Access to the Built Environment Standard.

(5) Partly as a consequence of this, I was able to join the BSI Disability Expert Reference Group (DERG), which previously had no neurodivergent representation, until I answered a request for new members, and its replacement with the BSI Accessibility Committee, which I also joined.

It should be noted that we neurodivergent activists had been extremely excluded and that included, at times, to the training necessary to help us to refine and realise our needs and objectives. 

It was as a result of compulsory training for new DERG members in the principles of inclusive design that I came to understand what Universal Design was (a concept enshrined in the 2006 UN Convention on the Rights of Disabled People (UNCRPD) (aka the UN Disability Convention).

It was thanks to fellow activist (and IT expert, including in the history of computing and its design as part of his joint IT and social sciences degree), that I learnt from sometime London Autistic Rights Movement (LARM) Secretary Gary Mohan, that the real (as opposed to the standards distorted since the 1980s by the commercial advantage of blinging things up to excite people to buy) default universal design accessible standard is dark grey or faded black type on a medium to light grey background, causing the least amount of visual stress for the population as a whole. This is allied to the fact that, as the neurodivergent wheelchair user and Senior Disability Advisor to Mayors of [Greater] London Ken Livingston and his successor Boris Johnson, the late Dave Morris stated, over 95% of the population prefers something other than black type on a white background.  

(6) An indirect spin off of the report and attempts to implement its findings, especially need 21 of the Disabled People's Charter of Essential Needs to be Met, "The right to an Individually Controlled Environment (ICE). This includes measures to ensure that a person can avoid sensory overload." was the BSI "Design for the Mind" initiative and its production of a first standard on neurodiversity in October 2022. 

However, although this correctly accepted the suggestion I put to one of its members, who happened to be involved, like me, with the Waltham Forest Dyslexia Association (WFDA), that they emphasise that sensory overload could result in damaging and even fatal epilepsy attacks, the standard failed  to insist upon any examples which actually meet essential health and safety requirements, including avoiding situations which can be immediately fatal for neurodivergent people, and which broke internal BSI rules for involvement, which include involving the Accessibility Committee with anything to do with access standards, and should also have involved recalling the suspended BS8300/6 Neurodiversity, Cognitive Impairment, and Access to the Built Environment Task Force (suspended in 2011 due to lack of funding) and in addition, which did not insist on some access essentials such as the need  for flexiplan and/or cellular workspaces for neurodivergent people. This constitutes dangerous and potentially criminally negligent (or even malicious) "neurowashing", and is reminiscent of the "greenwashing" of environmental concerns, pretending to meet concerns, whilst actually falsely citing existing bad practice as good practice, and worse than this, as model practice. This has led to, in terms of environmental concerns, the creation of Client Earth by activists to attempt to enforce existing laws.

(7) Genuine safe, neurodivergent inclusive, Universal Design based inclusive design remains unenforceable via the courts through disability, or any other, equality legislation. Neurodivergence is still not recognised as what it needs to be recognised as, a separate equality category from disability.  

(8) However, having emigrated to Portugal in August 2020, I have successfully used anti-torture provisions, with the support of the anti-torture authorities, here, to enforce universal design (grey background) when I was refused grey background materials on screens for some courses in Portuguese as a non-maternal language, at the University of Coimbra Faculty of Arts, thus avoiding a recurrence of terrible pain. This is an indirect result of the human rights with teeth approach which is a feature of the NAAG Majority Report, but not of Jo Todd´s report, which contains no enforcement mechanisms. This approach needs to be the primary approach, topped up with accessibility standards which incorporate this into universal design defaults and also,  universal design alternative designs, and finally personal assistance in accordance with the universal design triangle.                                                     

 Neurodiversity, Equality and Human Rights Report: The Majority is the Truth Plus One

 

A Neurodiverse Contribution to the Overall Equality and Human Rights Agenda as well as the Rights of Neurodiverse People

 

This first section, to which Jo Todd’s Report is added, is edited by Adrian Whyatt, Member, Disability Rights Commission Neurodiversity & Autism Action Group in his official capacity as a Member of that Group

 

Statement on why this Report is Necessary

 

 

This has been made necessary by the time constraints (the DRC ceases to exist at the end of September, its functions being taken over by the Commission on Equality & Human Rights, on 01 October 2007) and the fact that despite repeated warnings, essential information and acknowledgements have not otherwise been included, as well as the essential contributions of Greater London Action on Disability (GLAD) and others, despite repeated warnings (see appendixes). The recommendations in it, including definitions, are to be followed, as far as is practicable, in the few instances where there might be deemed to be a clash with the Final Report of Jo Todd (cut and pasted from a .pdf file with apologies for any errors in transposition). This .pdf file is available from Jo Todd, another member of the Neurodiversity & Autism Action Group. Emails: jotodd@key4learning.com; office@key4learning.com; key4learning@hotmail.com. 

 

The much later than expected arrival and incompleteness of the Draft Report of Jo Todd, especially in human rights terms, despite the fact that it contains much of value, means that it is necessary to produce this report in a far from completed format.

 

It is my intention, if at all possible, to send the last version of this report before the end of the DRC, after the scheduled meeting of the Action Committee set up to carry forward the discussions at the Politics of Autism meeting held at the Greater London Authority (GLA) on September 12, 2007. This, itself, largely comes about as a result of Autscape, an organisation run entirely by people identified as being on the autistic spectrum.

 

As a “Living Document” however, it will live on and should continuously and periodically evolve into a better document and basis for REAL ACTION.

 

Some of the recommendations might seem fanciful, and “impossible”.  But lots of things, that have come to pass, such as railway privatisation, have been deemed by many or most people to have been impossible at the time. 

 

 

STATEMENT ON OVERALL OBJECTIVE OF COMMISSION ON EQUALITY & HUMAN RIGHTS (CEHR) AND HUMAN RIGHTS POLICY IN GENERAL

 

The overall objective can be summed up in one word: 

 

Anti-eugenics.

 

Saying no to anti-eugenics is the “big ask”. It is also directly relevant to this group now that there are evergrowing antenatal tests (e.g. for elevated testosterone levels which, especially in boys, are implicated in some fashionable “scientific” theories of what makes someone more likely to be “autistic”). There are also some claims that some genes have been identified making dyslexia more likely. Again, many people believe, on questionable evidence, that this is more common in boys than girls. Making it also a gender issue. 

 

Likewise gluten and milk processing differences (including intolerance) (linked to the incidence of neurodiversity including autism, hence the Sunderland Tests by Professor Paul Shattock).

 

STATEMENT ON THE PARIS PRINCIPLES

 

This is generally most effectively achieved by Human Rights organisations when the United Nations (UN) Paris Principles 1991 are applied. Amongst the most important requirements  arising from these are: 

 

Independence of Government; 

Representativeness;

Comprehensiveness;

Inclusivity

Accessibility and

Sufficient Resources.

 

We agree with the vast majority of responses from marginalised groups across all strands of equality and diversity in the consultation leading up to the formation of the CEHR that this should be the basis on which the CEHR runs. 

 

The Government has rejected this view, but we stick with it.

 

This is a LIVING DOCUMENT which will be built on. The Neurological Alliance has set up and operates a Long-Term Conditions National Service Framework (NSF) Implementation Group. 

 

It is intended, even if it is not possible this time, that future editions will include more appendices, on disability history and also on the workings, amongst other things of the DRC Neurodiversity & Autism Action Group predecessor, the arguably much more representative, DRC Neurodiversity Group.

 

This document states that, likewise, but much more extensively a NEURODIVERSITY ACTION, DEVELOPMENT AND IMPLEMENTATION GROUP is to be set up. This is to monitor and help ensure, independently, that action is to be taken. This will itself help to monitor any and all legal successors to the DRC & the Neurodiversity & Autism Action Group.

 

The very short time span available for this document necessarily means it will not be that polished by the time the DRC comes to an end on September 30^th 2007. Nevertheless it is the first document of its type in the world to be produced by anyone on an official human rights body. Its applicability is international and is intended to be extended from the DRC’s limited remit (predominantly Great Britain) throughout the UK and Internationally. The DRC has had a limited international role. 

 

Disabled Peoples' Charter for Essential Needs to be Fully Met

 

1.  Full accessible environment.

2.  Full accessible transport system.

3.  Technical aids, equipment and assistive technology.

4.  Accessible housing, including funding for adaptation.  

5.  Personal assistants.

6.  Inclusive education and training.

7.  Adequate income.

8.  Equal opportunities and guaranteed employment.

9.  Appropriate accessible information.

10. Advocacy

a. Independent Advocacy.

b. Self-advocacy

c. Peer Advocacy

d. Citizen advocacy

e. Legal advocacy

 

11. Counselling.

12. Appropriate and accessible health and social care provision [. Add]: Including diagnosis, treatment and support, which includes appropriate Mental Health services and treatment taking into account the nature of individuals disabilities including their diagnoses and how they are affected.

13. Coaching

14. Individual style of social interaction accepted and supported.

15. Fully accessible legal systems, this includes judicial civil and criminal systems.  This includes mediation and arbitration systems, comment, liaison and complaint systems, tribunals and all other forums] 

16. Fully accessible police and law enforcement system. 

17. Effective and Fully Funded Access to all stages of the legal system from informal dispute resolution onwards. As part of this a Disability Courts structure.

18. Extension of and effective enforcement of the Disability Equality Duty (DED) throughout the legal system, as part of its extension through all sectors of society: public, private, voluntary and mixed. Including all legal and law enforcement processes. This includes private security guards. And compulsory and comprehensive training in the DED for all.

19. The Right to have religious, spiritual, other belief and cultural needs met in full. 

20. Court decisions to be made fully compliant with the Disability Discrimination Act (DDA). All participants in the legal system, including judges, to be held fully and personally liable under the DDA and other legislation for any breaches of disabled people’s rights. To support this they are to have unlimited scope to order disabled people’s needs to be met.

21. The right to an Individually Controlled Environment (ICE). This includes measures to ensure that a person can avoid sensory overload.

 

This Charter is based upon the Southampton Centre for Independent Living’s 12 Needs of Independent Living, with additions by the Mental Health Action Group, based in Hull and the East Riding of Yorkshire, in 2007. 

 

Notes on MHAG and its concerns

 

1. The Disability Rights Commission (DRC) established a DRC Neurodiversity Group followed by the DRC Neurodiversity & Autism Action Group following effective lobbying at the DRC AGM in 2003 by Mr Colin Revell, MHAG volunteer, and NAS Councillor, Mr Russell Stronach, as well as concerted and continuous pressure from many others, notably his fellow NAS Councillors Adrian Whyatt (mainly in his capacity as Co-Chair of DANDA: Developmental Adult Neuro-Diversity Association, but also through his involvement in other organisations) and Larry Arnold (who is also an NAS Board member). This is to be included in part of its final report of September 2007 before the DRC is replaced by the CEHR. 

 

2. They have also expressed their concern that there needs to be more emphasis on the Mental Health needs of neurodiverse people. They point out that, for example, the minimum standard set by the Royal College of Psychiatry on it. Also, in the light of the Piers Boldruc case and many others, more support against misdiagnosis (e.g. schizophrenia for Asperger’s Syndrome and depression for (especially developmental) dyspraxia. 

 

3. In addition, it should be noted that MHAG was established before the DRC set up its Mental Health Action Group. It lobbied the DRC to set up a Mental Health Action Group and one of its members has served on that group.

 

4. MHAG prefers the term “Inclusive Living” to “Independent Living”. This is also in line with best practice. MHAG prefers “Centres of Inclusive Living” to Centres for Independent Living, just as it prefers Organisations of Disabled People to Organisations for Disabled People.

 

5. Adrian Whyatt asserts copyright to the term “World Centre of Inclusive Living” (WCIL). WCIL requires all stakeholders to be included and to sign off on policies, including access needs. It also requires that representation of disabled people needs to be reasonably proportionate according to disability type etc. Adrian Whyatt immediately gives copyleft to MHAG to set up WCIL in its offices in Hull. Likewise for United Kingdom Centre of Inclusive Living (UKCIL), etc. 

 

6. MHAG wants to ensure that the incorrect popular stereotypes about disability being mainly visible and obvious (apparent impairmentism) is corrected.

 

7. MHAG and WCIL are determined that Inclusive Living remains under the control of truly representative groups of disabled people and is not hijacked and distorted by other groups, especially as disabled people as a whole are the most excluded group in society.

 

 

 

 

 

 

 

REASONS FOR INSERTING THIS DOCUMENT & APPENDING JO TODD’S REPORT 

 

1. Though there is much that is good about Jo Todd’s Report, there needs to be a greater emphasis on the politics of best practice in implementing fundamental international human rights principles and a greater understanding of the wider disability (and especially disabled people’s) movements. For example, the phrase sheltered accommodation must be removed to bring the document into line with the Right to Inclusive Living (a more accurate and empowering concept than Independent Living).

 

2. Crucially, there is no explicit mention of one thing that has become clear: Given the general failure of the wider disability movement to respond to or take seriously the needs of neurodiverse people, as well as broader society, it is essential to demand a change in the structures of the pan-disability organisations themselves: there must be proportional representation according to how common broad groups of disabilities are as well as key stakeholders who have the power of veto over access needs and general demands that do not include them. This is at all levels, up to and including the most senior levels. Every single national major national pan-disability organisation in the country without exception that I can think of (NCIL, UKCODP, RADAR) is Chaired by a neurotypical wheelchair user, even though they represent a tiny proportion of disabled people. Likewise the DRC (Bert Massie) and the new Commission for Equality and Human Rights (CEHR) Disability Commissioner and Chair of the CEHR Disability Committee. Other groups are represented, BME, Learning Disability, Mental Health, Gay Community, etc., but the Neurodiverse Disabled People's Movement activists are not represented. Nor in their agenda. Proportional representation and recognition of neurodiverse people as a key stakeholder group with the power of veto over general standards (through the inclusive living (a more accurate and empowering concept than “independent living”) agenda) must therefore be first priority in terms of POLITICAL DEMANDS and must build on the Disability Equality Duty (DED). 

 

3. Few regional or local pan-disability organisations are any better.

 

4. Therefore, this document sends the following message:

 

4.1.1. NCIL, UKCODP, RADAR, DRC, CEHR, etc: 

 

4.1.1.1. You are NOT fully representative of Disabled People until your Governing bodies represent them proportionally. And this is reflected in your voting procedures and policies on the lines stated above. Until you do, you are as unrepresentative of disabled people as the House of Commons was before the Great Reform Act of 1832. You are instead, just an organisation of a collection of "rotten boroughs". With gross overrepresentation of the aristocracy of the "Disability Movement", neurotypical wheelchair users, and a corresponding gross underrepresentation of the potential lumpenproletariat, or underclass, neurodiverse people. The same applies to the CEHR which has followed the DRC's bad example by failing to appoint anyone from the potential lumpenproletariat, appointing only from the wheelchair aristocracy and their allies to CEHR Commissioner positions. The potential lumpenproletariat have not even been appointed to the Disability Committee positions. Until this is addressed, your legitimacy is highly questionable, to say the least. 

 

4.1.1.2. Your key demands must include all key neurodiversity demands (some of which are included in Jo Todd's draft report for the DRC Neurodiversity & Autism Action Group). 

 

4.1.1.3. Until you are prepared to support our demands, and ensure proportional representation, many if not most neurodiverse people will not automatically view it as being in our best interests to support yours. Quite the opposite, they will add to the taxes we all have to pay (including Value Added Tax (VAT), which noone can entirely avoid). Nor will they or their organisations tend to identify with the "Disability Movement" or the "Disabled People's Movement". This makes it much less likely that your demands will be met anytime soon by society as a whole, as politics is ultimately a numbers game. 

 

4.1.1.4. The Individually Controlled Environment (ICE) as proposed by myself and passed unanimously with all major types of disability represented at RADAR's New Spirit Coalition in December 2005 is the way forward. (This must come right after items 1-3 in the final document, and everything must flow from it).

 

5. In addition in the final report

 

5.1. The contributions of pan-disability organisations, especially those not funded by the Government shekel or the long arm of the Government shekel, charitable funding and service contracts, must be explicitly acknowledged. There is no acknowledgment of this in the draft report, although there were extensive contributions. 

 

5.2. International best practice over inclusion (e.g. Finnish education), must be acknowledged.

 

5.3. Capacity building needs must be acknowledged. 

 

5.4. An invest to save approach must be used. Not getting neurodiverse needs met has helped to result in the highest incarceration rate in Europe and the lowest educational attainment of any developed Organisation for Economic Cooperation and Development (OECD) country. 

 

5.5. The efforts of the rare neurodiverse people, such as neurodiverse wheelchair user, David Morris, who have a track record in the disabled people's movement, and in terms of implementing policy, must be explicitly acknowledged. It has been said from a normally reliable but confidential source that he withdrew from the DRC Neurodiversity Conference in March 2007 because of the marginalisation of the disabled people’s community activist voices.

 

6. Personal and group contributions must be acknowledged. E.g. of Colin Revell and Russell Stronach, without whom the predecessor DRC Neurodiversity Group would not have happened. 

 

7. The promise of the All-Party Parliamentary Group on Disability (APPGD) and RADAR, which supplies its secretariat, to take forward all of the DRC Action Groups must be explicitly acknowledged.

 

8. This report was not done to time and promised contributions (even when asked to be dictated over the phone) were not included. Including mine.

 

 

 

 

 

FOREWORD: DEFINITIONS OF NEURODIVERSITY

 

See also appendixes and extracts from the appended Report by Jo Todd of which a full version is available as a .pdf file. Her definitions are somewhat more restrictive.

 

The definitions that follow were submitted, and accepted, without dissent, in response to a request to each and every member of the DRC’s Neurodiversity & Autism Action Group by Adrian Whyatt, and followed consultation with informed neurodiverse disability activists and some of their organisations. 

 

1. Superfast definition
              

Neurodiversity=jagged profile.  Neurotypical=even profile.

2. Brief definition 

Neurodiverse people have a jagged ability &/or       processing (including neurological) profile, at least in part. Neurotypicals do not.

3. Labels neurodiverse people commonly have

Many have been unlabelled and have difficulty getting "diagnoses" at all to get past gatekeepers for the minimal services there are, if they are lucky enough to be offered them. 

As well as the labels included in the appended original document, mental health labels must be included. This means that neurodiversity, at least mildly, affects well over 40% of the population, and rising, towards a majority, of the population. Most do not even realise that it exists, let alone that they are affected by it.

 

A key contribution to the wider Disability Agenda 

 

ICE: THE INDIVIDUALLY CONTROLLED ENVIRONMENT. 

 

We must start with our contribution to wider inclusion issues. A general report then follows.  Whistleblowing protection is claimed for some of the issues raised in this section of this document, and indeed for the whole report, as there have been verbal attempts to claim copyright protection over parts of this document, as well as attempts to silence some of what has been said.

 

This comes out of the Neurodiverse part of the disabled people’s movement. And was unanimously agreed across all types of disability difference. The individually controlled environment works for every type of difference, including every type of disability and sets a real standard for truly “Universal Design” and Inclusion. This goes broader than just disability and covers every area of social inclusion (including race and culture).

 

 

 

MINI-BRIEFING FOR RADAR New Spirit Coalition : ICE (INDIVIDUALLY CONTROLLED ENVIRONMENTS), a new paradigm for disability inclusion and Access covering all types of disability. Developed out of… 

 

SOME OF THE POTENTIAL SOLUTIONS THROWN UP BY THE QUIETER HOMES FOR LONDON – EXPLORING PRACTICAL SOLUTIONS TO A FORGOTTEN PROBLEM CONFERENCE OF 03 NOVEMBER 2005 Organised by the Greater London Authority in conjunction with the UK Noise Association

 

Background

 

The UK has lower noise insulation standards even than Poland and the Mediterranean EU countries. The highest in Europe are in Austria. As a result of growing complaints, there are a rash of rather heavy handed and ineffective measures, such as ASBOs, being used.

 

Some disabled people have even attempted suicide as a result of a failure to meet their sensory access needs, especially over noise. Heat, light, colour, smell and texture also form access issues. Not to mention, allergies. The fashion for noisy wood floors makes it worse. A wide range of disabled people are especially affected by these issues (those with neurological conditions and mental health issues especially, but by no means exclusively). 

 

This conference looked at “ways of incorporating internal noise insulation in the Decent Homes Standard; housing allocation policies, tenancy agreements and management practice; grant aid, equity release and other means of securing more resources to improve noise insulation; improving information on noise insulation, including Quiet Homes labelling; and joining up policy on noise insulation with energy efficiency. It built on the Quiet Homes for London report: http://www.london.gov.uk/mayor/strategies/noise/docs/Quiethomesforlondon.pdf

 

Direct impact on incidence of disability

 

One of the speakers, Professor Stephen Stansfield, a psychiatrist, reported on specific studies around airport relocation in Munich, Germany, which showed a higher incidence of neurodiversity especially in children closer to airport noise problems. There was less when the airport was moved and more in the area it was moved to. 

 

Problems for older people and those with an existing illness were also alluded to.

 

Equality issues

 

More socially deprived groups, including disabled people, tend to live in the higher density areas which are much more affected. The London Road Traffic Noise Map, www.noisemapping.com , cross referenced with other data, shows the disproportionate impact of this. 

 

POTENTIAL SOLUTIONS

 

1.   Super high density buildings

 

Examples of these, with a central core and a three leafed clover shape, from Macao, China, were given. Without implementing something similar in some of Britain’s urban areas especially, there would seem to be practically no possibility of meeting the housing needs of disabled people and many others.

 

Thick concrete is used, providing the necessary insulation and the only boundary walls between the flats directly are in the bathroom areas.

 

2.    Practical acoustic insulation in the home

 

A range of acoustic insulation products were presented. I will bring a sample to the meeting.

 

3.   Traditional housing types with noisier areas away from the neighbours with a quieter core was presented. 

 

This included hallways on adjoining properties.

 

4.   The Silent Pod. 

 

Modular rooms within a room were presented. These also have an advantage if someone want to make a lot of noise. This technology has been successfully developed, especially in Japan, in the “Bubble Hotel” concept.

 

5.   Higher standards at local authority level.

 

Local authorities do have the power to impose higher standards. Some have done so. Especially in Scotland where some high standard “model buildings” have recently been built. This can be built on.

 

6.   Ownership systems and redevelopment rights need to form a part of this agenda. 

 

In other countries (e.g. Greece, Israel, parts of France (such as Corsica) and Italy), the right to redevelop your home (or a suitable alternative plot) so that you have flats located one above the other (or sometimes opposite) is firmly established, provided a much greater degree of family support. 

 

 

7.   ICE standards need to be incorporated into any access needs requirements.

 

These must be individually controlled.

 

ACTION POINTS:

 

1.   Incorporation of this agenda into RADAR housing policy.

 

2.   Incorporation of this into the Independent Living Agenda, including independent living bill. 

 

3.   Social enterprise pilot projects are to be encouraged.

 

4.   In terms of campaigning we need to consider whether we want to set up Community Interest Companies (CIC)s and/or Co-operatives which will have far fewer political restrictions than RADAR’s current NSC Coalition. This would also help us to move further away from the traditional charity modus operandi (way of working) and much more towards a rights based social enterprise modus operandi.

 

Presented by Adrian Whyatt, Co-Chair, DANDA: Developmental Adult Neuro-Diversity Association, December 12^th 2005 to the RADAR New Spirit Coalition (NSC).

 

The World’s First Organised Pan-Neurodiversity Organisation: The Coventry Neurodiversity Association

 

This is not to be confused with DANDA (see appendixes), which only covers “developmental” neurodiversity. It also covers all other forms of neurodiversity (including acquired). For definitions see the appendices on GLAD.

 

NOTHING ABOUT US WITHOUT US AND ITS IMPLICATIONS

Misrepresentation by non-disabled people led organisations

 

A key recommendation is that it be made a very serious criminal offence for organisations not controlled by disabled people to claim to speak on their behalf. Or for them to be reported as such by the press or other people.

 

Existing laws on misrepresentation and the Trades Description Act must be strengthened and extended. This applies to many of the big disability charities. Examples include Mencap and the National Autistic Society (NAS) (originally and more honestly named as the National Society for the Parents of Autistic Children).

 

This is a fraud on the public as they tend to think that these charities are acting “in the best interests” of disabled people. When they are actually often imprisoning them in “care homes”, etc. These might meet a desire by relatives to get rid of them, but they are the antithesis of independent living.

 

The noisy open plan offices of the National Autistic Society, for example, and their bright white colours, especially on the upper floors, are inaccessible because of these characteristics to many, if not most service users.

 

Disabled people’s organisations with employees typically (according to a study published around the turn of the millennium) employ about 70-75% disabled people. The far larger non-disabled people led organisations, typically employ only 5-15% of their workforce as disabled people. With the average closer to 5%. This compares most unfavourably with the percentage of the population that has a declared disability, even under the most conservative figures.

 

They could, if they wanted to, legally employ 100% disabled people (as some disabled people’s organisations do). This would create at least 100,000 jobs. Able-bodied people have few problems finding work in a dynamic economy like the UK, especially if they are prepared to do anything.

 

Key Recommendation

 

Legally enforceable transformation of all disability organisations (including service providers) into 100% disabled people run, controlled and employed organisations within 10 years.

 

Key Recommendation 

 

NEURODIVERSITY TEAMS

 

This was suggested by Paul Wady, an active member of the neurodiverse (including autistic) community:

 

Every public body and major organisation (whether public or private) must have a trained team dedicated to neurodiverse people, with full and comprehensive neurodiversity equality training delivered by qualified neurodiverse people with a full  understanding of the social model of disability, disability politics and history and wider human rights issues.

 

They must be cross-trained in all types of neurodiversity.

 

EMBEDDING NEURODIVERSITY IN ALL TRAINING PROGRAMMES AND EDUCATION. 

 

On the lines above.

 

OTHER RECOMMENDATIONS

 

See rest of document (including attached Jo Todd document and appendices).

 

 

 

 

Neurodiversity, Equality and Human Rights

 

(Original Report by Jo Todd). All References are to the page numbers in her .pdf. This also contains original diagrams which would not cut and paste. 

 

Table of Contents

 

 

BACKGROUND

 

3

The DRC Autism and Neurodiversity Group 

 

3

INTRODUCTION

 

3

WHO ARE THE NEURODIVERSE? 

 

5

Cognitive processing differences 5 

Root cause 5 

Effects of Neurodiversity 7 

Strengths and Talents 10 

 

Terminology 11 

 

How many people are Neurodiverse? 12 

 

Screening and Assessment 13 

 

SOCIAL FRAMEWORKS 15 

Maslow’s hierarchy 15 

Every Child Matters 15 

Neurodiversity 15 

HIERARCHY OF NEEDS 17 

Physiological Influences 17 

Safety and Contentment 18 

Acceptance and Opportunity 19 

Valued and Respected 20 

Well–Being and Fulfilment 20 

THE DRC PRIORITIES RELATED TO THE NEURODIVERSE 21 

9 Priorities for a New Agenda 21 

 

1. Promoting a culture of equality and human rights. 21 

 

2. Bringing an end to child poverty 22 

 

3. Increasing life chances through learning and skills 22 

 

4. Ending poverty and widening employment opportunity 23 

 

5. Increasing democratic participation and active citizenship 24 

 

6. Developing a social care system fit for the future 24 

 

7. Tackling health inequalities 25 

 

8. Meeting the future housing challenge 25 

 

9. Building stronger, safer communities 26 

 

APPENDIX 1 DRC MANIFESTO ON BEHALF OF PEOPLE IN THE 

NEURODIVERSE COMMUNITY 

 

27

APPENDIX 2: RELEASING EXCELLENCE -AILEEN QUINTON 

 

29

APPENDIX 3 DANDA 

 

54

APPENDIX 4 NOTES ON SENSORY SENSITIVITY 

 

APPENDIX 5 (inserted by Adrian Whyatt) GREATER LONDON ACTION ON DISABILITY SUBMISSIONS

 

APPENDIX 6 KEY QUOTES AND PRINCIPLES INFORMING AMENDMENTS TO THIS DOCUMENT (INSERTED BY Adrian Whyatt)

 

APPENDIX 7 DRC NEURODIVERSITY GROUP MANIFESTO OF NEURODIVERSE PEOPLE (Drafted by Adrian Whyatt and accepted unanimously and unamended by that group in 2005)

 

APPENDIX 8 The UPIAS Bias Update – or some thoughts on how the origins of the disabled people’s movement in organisations such as the Union of the Physically Impaired Against Segregation (UPIAS) have continued to distort public policy about disabled people and to exclude and/or marginalise other groups of disabled people in the disabled people’s movement itself, especially “new groups” such as neurodiverse people fighting for recognition (INSERTED BY Adrian Whyatt)

 

 

 

 

 

 

APPENDIX 5

 

Re: GLAD Neurodiversity & Autism Action Group (NAG) summary of minimum set of demands as revised to take in comments and developments was Neurodiversity/Autism Conference on 26 March

27 August 2007

Dear all

This is a summary document as revised, including a minimum set of demands as requested by Bob Niven at the NAG meeting of 17 August 2007. 

These must be incorporated in any outcomes of the joint meeting of NAG & the DRC's Learning Disability & Mental Health Action groups this Friday and all other meetings carrying over into the new CEHR. 

If this is not done then dissenting reports will be issued, as quickly as practicable.

It should be added that RADAR is pledged to help take forward this agenda, nationally, regionally and internationally through its networks. 

Yours sincerely

Adrian Whyatt, Chair.

GREATER LONDON ACTION ON DISABILITY

5, Park House, 13 Girdlers Road, Brook Green, nr Kensington Olympia, 

West Kensington, Hammersmith, London W14 0PS. Tel: 020-7-603-9710. Email: glad2007@gmail.com. 

Working on behalf of disabled Londoners since 1952 

Minimum set of main demands of neurodiverse and autistic people 

1.   Definition of ability (including differ-, (including alterna- and dis-)ability and disabled people 

 

GLAD follows primarily the difference based social (social ecological) model of ability (including) disability. Thus we define ourselves as disabled people because we are "disabled by society and the environment because of our differences including biological differences...and more generally by failing to meet our needs". GLAD very much supports the use of definitions of disability such as one of those used by the Liberal Democrat Disability Association (LDDA): "difference, including an element of impairment". 

    2. Definition of neurodiverse people        

    2.1. Superfast definition
              

Neurodiversity=jagged or uneven profile.  Neurotypical=even profile.

    2.2.  Brief  definition 

           Neurodiverse people have a jagged ability &/or       processing (including neurological) profile, at least in part. Neurotypicals do not.

2.3. Labels neurodiverse people commonly have

Many have been unlabelled and have difficulty getting "diagnoses" at all to get past gatekeepers for the minimal services there are, if they are lucky enough to be offered them. 

As well as the labels included in the appended original document, mental health labels must be included. This means that neurodiversity, at least mildly, affects well over 40% of the population, and rising, towards a majority, of the population. Most do not even realise that it exists, let alone that they are affected by it. 

Some tend to be more obviously impacted than others, especially, though not as an absolute rule, at the extremes people with severe autism and/or those who have had severe strokes, brain injury or who otherwise have great mental health needs. 

There is a pressing need to break down these administrative/diagnostic/medical definitions so that needs are actually much better met. 

We thus reject the concept of an ever-broadening "autistic" or "neurodiversity" "spectrum". We embrace instead the concept of a "neurodiversity continuum". The "autistic spectrum" is a small subset of this and the use of this term should be superseded by "neurodiversity continuum". 

Neurodiverse people tend to have the same access needs and similar support needs. 

In terms of needs, people with the "autism" label tend to lead the way, accompanied by those with "severe" attached to other labels. They tend to have the highest levels of sensory overload, etc. Therefore it is vitally important to make the environment accessible to even the "lowest-functioning" "autistic" person. By doing so you will help to make it accessible to all neurodiverse people. A number have their own particular needs, such as being Makaton users. 

3. We intend to concentrate on common unmet needs that are not fully appreciated. 

       3.1.Organisational software, 
       3.2. Personal assistance.  

       3.3. Avoiding mislabelling with everything from depression to  schizophrenia, the most important unappreciated needs tend to be: 

1.   Access to non-open plan environments. This situation is getting worse and worse with the open plan and standardisation manias. What is needed, instead, is a flexible environment, an Individually Controlled Environment (ICE), in which, like in a "good old fashioned office" (apart from wheelchair access and hearing loops, etc), everyone is able to control their own individual temperature, light, textures, colour scheme, air flow, sound environment, and smell environment, and to be able to screen off their own area (or open it up if need be). This is eminently achievable using existing technologies (including, in extreme cases, creating rooms within a room). The same thing applies to modes of transport and housing and can lead to the retention, with slight modifications, of some old train carriages so that people can sit in their own quiet compartment (with CCTV backup), and converting some of the existing "Quiet carriages" into "silent carriages". The highest standards on noise insulation in Europe are currently to be found in Austria. 
This also includes the colour scheme of all documentation.

 

2.   Access to gluten-free and milk-free products (both medicines and foods). 

3.   Total transcripting of meetings, etc (no "summarising out" of things considered "unimportant"). Linked to this is comprehensive communication, including an end to assumptions about "body language" and a "Royal Response" (attention to every detail, however "minor"). 

4.   Tackling terrorism, other crimes, and exclusion comprehensively. The "Moron Bomb Plot Leader" headlines in the Sun following the convictions of people for the 22/7 bomb plot illustrate the urgency of this as does ever-increasing gang violence. This is backed by the DRC's own research which shows the ethnic groups most affected by disability are the predominantly Moslem Pakistani and Bangladeshi communities. This means reinforcing the relevant "Equality Duties" on grounds of national security, etc. 

5.   Comprehensive and immediate action (with no budget cap because of the urgency and the savings) is essential. This should be called Access to Equity (AtE) and modelled on Access to Work (AtW), with some changes (capacity building), user-control, getting rid of "contribution requirements" altogether for funding of less than £20,000, etc. This includes the creation of new and effective organisations, and the transformation of existing ones. 

6.   Embracing & using as standard Aileen Quinton's "Releasing Excellence" model of human resources.

7.   All of these things are necessary and represent non-negotiable minimums.

    Yours sincerely

    Adrian Whyatt, Chair, on behalf of GLAD.

Appendix: Some background documents and correspondence. Does not include ICE (Individually Controlled Environments) and Revealing Excellence documents which have been separately posted and sent to NAG and its predecessor the DRC Neurodiversity Group (as well as RADAR's New Spirit Coalition (NSC) which unanimously approved ICE as a concept covering all of disability in 2005. 

 

 

GLAD Message of Support for DRC Conference on Neurodiversity of 26 March 2007

 

On 3/22/07, Adrian Whyatt <adrianwhyatt@gmail.com> wrote:

Dear all

 

As Chair of GLAD I have been authorised to issue this supportive message on behalf of GLAD. This is repeated in the body text of this email for anybody who might have difficulty opening attachments. No final statement of needs can be endorsed by us unless there is no "editing out" of essential neurodiverse (and autistic) unmet needs such as a reform of the Human Resources system, disability definition reform and the ICE (Individually Controlled Environment) alternative to open plan mania, including cellular offices for those who need them, and separate compartments on trains, is endorsed. Likewise full inclusion of those who may not sign up, 100% to CEHR and New Labour credo on equality and diversity. This requirement to signing up to their entire equality and diversity credo for CEHR and ODI posts, smacks of the last throes of the pagan Roman Empire (circa 303 AD) in which those who professed Christianity could not progress beyond the rank of a local town supervisor of the imperial brothels if they spoke their beliefs openly(see especially the Life of Saint Hesychios (previously demoted to just such a post and then martyred on direct orders of the Roman Emperor for refusing to recant (through drowning with millstones around his neck) on March 2, 303 AD). Constantine the Great (see statue outside York Minster) was crowned in York 3 years later).

 

Yours

  

Adrian Whyatt, Chair, Greater London Action on Disability (GLAD)

 

GREATER LONDON ACTION ON DISABILITY

5, Park House, 13 Girdlers Road, Brook Green, nr Kensington Olympia, 

West Kensington, Hammersmith, London W14 0PS. Tel: 020-7-603-9710. Email: glad2007@gmail.com .

 

Working on behalf of disabled Londoners since 1952

 

Minimum set of main demands of neurodiverse and autistic people 

 

1.   Definition of disabled people

 

GLAD follows primarily the difference based social model of disability. Thus we define ourselves as disabled people because   we are "disabled by society because of our biological differences (apart from those solely related to age, gender, race and ethnic origin), including both talents and areas of naturally superior functioning which society refuses to recognise and discriminates against us for (differabilities or alternabilities) and impairments." 

 

This is to try to eliminate material and spiritual poverty and push society towards a focus on talents – what people can do and what they are good at, and not just a negative focus purely on impairments, which has tended to be confused with complete inability. 

 

Other models of disability are tested against this and are accepted only to the extent that they are compatible with it. This includes the Medical, Charity, Administrative and various Religious and other models of disability. 

 

We very much recognise the diversity of disabled people and thus condemn the Commission on Equality and Human Rights (CEHR), and the Office for Disability Issues and other Government and official bodies recent insistence that everyone who wants to work for them, directly or indirectly, publicly signs up to their entire credo (or belief system) even if it contradicts their fundamental and freely and peacefully expressed religious or other beliefs. This includes people for whom this "obsession" forms part of their belief system, and of their 

"diagnosis", and thus of their difference, such as someone with asperger's especially. It is thus disablist, hypocritical and wrong. 

 

2.   Definition of neurodiverse people 

 

It should be noted that neurodiversity is at least 25 times as common as autism (at 25+% of the population) and   so it is high time to stop trying to see it as an extension of autism (which remains mired in the can't talk/interact/Rainman/screaming uncontrollable children in the public imagination). 

 

We tend to favour the use of "alterna-", where possible, rather than the purely negative "dys-". And also the dropping of names that generally glorify "worthy" dwems (dead white European males), but don't really describe what things are really like and tend to end up confusing people. This allows peoples superiorities as well as deficits to be considered ( e.g.  the superior honesty, in general, of alternasocics (people who interact in an alternative way) who have been given the label "Asperger's Syndrome"

 

There are quite a number of definitions of neurodiverse people. And this is still a matter of legitimate debate, with many people having different definitions. We favour quite a broad definition, as Wikipedia certainly has also done, as we want to ensure that people's needs and aspirations are met rather than that someone manages to invent a new label for someone else. So, we propose that neurodiverse people are seen as disabled people whose processing differences, especially neurological processing differences make them disabled people as defined in 1. We feel, however, that it is unhelpful to all concerned to include people with low functioning autism (Kanner's Syndrome) or global learning difficulties (aka differences)(low-functioning in every respect(whether developmental or acquired or degenerative), except where there are "islets of ability" (or talents), or areas of markedly increased . We thus reject the concept of an ever-broadening "autistic" or "neurodiverse" "spectrum". We embrace instead the concept of a "neurodiverse continuum", which however, excludes those people with low-functioning autism and other conditions who do not meet our definition of neurodiversity. 

 

Neurodiverse people tend to have the same access needs and similar support needs. Developmentally neurodiverse people, however, tend to be far more creative than other neurodiverse people, though there are very rare exceptions where adult stroke and other brain injury survivors have acquired a new ability ( e.g. three recorded cases of stroke survivors acquiring a new ability to write poetry). People with some degenerative conditions, such as "Alzheimer's" can go through a creative "teenage" phase, but then pass out the other end as the condition progresses. 

 

In practice, it is helpful to divide neurodiversity into four broad groups, though it should be noted that categories (1) and (2) do tend to overlap and the "environmental insult" in early childhood may well result in someone who : 

 

(1)           Developmental

 

This includes those with labels such as (developmental) dyspraxia, (developmental) dyslexia, attention deficit (hyperactivity) disorder (ad(h)d), tourette's syndrome, asperger's syndrome, etc. If this is triggered by some sort of injury or other "environmental insult" then it must be at such an early age that the person can not remember having been any different. This group can rarely get compensation, and has generally never been "habilitated", let alone "rehabilitated". 

 

(2)           Acquired 

 

This includes traumatic or acquired brain injury survivors whether directly through a head injury or through a stroke, or other means (such as a tumour or in reaction to an injection). It should be noted that, if this happens early enough in life, this may well be form all or part of the "environmental insults". 

  

(3)           Degenerative

 

These are degenerative neurological conditions, during which someone at least goes through a phase of neurodiversity. Such as Multiple Sclerosis, Parkinson's and even Alzheimer's. With some conditions, however, they may or will degenerate beyond the point where they can be considered to be neurodiverse. 

 

(4)           Combined or mixed

 

Can be things like cerebral palsy, where there is a trauma around the time of birth. Also, if the brain injury was the trigger, or if a developmentally neurodiverse person has a brain injury later in life (in which case the developmental neurodiversity can be described as pre-morbid). 

 

(5)           Autism

 

We are confining this to low-functioning autism (returning it to the 1960s definitions of it), as the "broadening out" of the autistic spectrum may have been good business for some people, but has led to confusion. The support needs of a low-functioning non-verbal autistic person are self-evidently highly different from those of a person with alternasocia (aka Asperger's Syndrome). 

 

However, in terms of needs, autistic people lead the way. They tend to have the highest levels of sensory overload, etc. Therefore it is vitally important to make the environment accessible to even the lowest-functioning autistic person. By doing so you will help to make it accessible to all neurodiverse people. A number have their own particular needs, such as being Makaton users. 

 

3.   We intend to concentrate on unmet needs that are not fully appreciated. 

 

Most people realise that spell checkers, etc., are needed. But, few realise how much things like organisational software, and personal assistance, can benefit many if not most neurodiverse people. 

 

Apart from the problem that most people who are developmentally neurodiverse do not realise that they are developmentally neurodiverse, let alone have access to even proper diagnostic services, including systematic confidential population screening, which we would recommend, and tend to be mislabelled with everything from depression to schizophrenia, the most important unappreciated needs tend to be: 

 

3.1.      Access to non-open plan environments. This situation is getting worse and worse with the open plan and standardisation manias. What is needed, instead, is a flexible environment, an Individually Controlled Environment (ICE), in which, like in a "good old fashioned office" (apart from wheelchair access and hearing loops, etc), everyone is able to control their own individual temperature, light, textures, colour scheme, air flow, sound environment, and smell environment, and to be able to screen off their own area (or open it up if need be). This is eminently achievable using existing technologies (including, in extreme cases, creating rooms within a room). The same thing applies to modes of transport and housing and can lead to the retention, with slight modifications, of some old train carriages so that people can sit in their own quiet compartment (with CCTV backup), and converting some of the existing "Quiet carriages" into "silent carriages". The highest standards on noise insulation in Europe are currently to be found in Austria. 

 

3.2.      Access to gluten-free and milk-free products (both medicines and foods). 

 

4.   Other groups who can benefit 

 

A study done by the Greater London Authority (GLA) in conjunction with the Trade Union Disability Alliance (TUDA) and others, and published in 2006, it was found that one of the greatest unmet needs across all types of disabled people, was for quiet housing and workspaces. 

 

Religious groups and various people who share their dietary preferences also benefit, especially those with fasting requirements (Hindus, Jews, Jains and through to some Christians (most especially Orthodox Christians (above all True Orthodox Christians) or the need for constant peaceful and (very largely) silent undistracted prayer (such as (especially True) Orthodox Christians (who call this "hesychia" and who have sometimes had to fight Western crusaders and others for this right). 

 

5.   Finance – saving by not locking up 

 

A hugely disproportionate proportion of people in jail are neurodiverse, especially developmentally neurodiverse, normally undiagnosed. Also, a lot get wrongly branded as liars because of their memory and sequencing problems, differences in tone and intonation and often physical differences in terms of being able to keep eye contact, other aspects of body language (both productive and receptive, proprioception, etc). 

 

Instead their creative potential needs to be realised and their interests channelled, whether it is in strategic thinking, fantastic knowledge of railways and/or buses, great art, or whatever. Such as an interest in dates and True Orthodox Christianity and history and thus correctly predicting that Al-Qaeda would attempt to attack in and around the Feasts of John the Baptist (Beheading (9/11(New Style (NS)(American) (11/9 (Global Standard)/29/8 (Old Style (OS), Nativity (7/7(NS), 24/6 (OS), and, of course, the latest plot (in Docklands, was uncovered and thwarted (are they finally beginning to listen? on the Feast of the Beheading of John the Baptist). 

 

6.   Rejecting the one size fits all universal mediocrity model of standard Human Resources. 

 

This means following Aileen Quinton's Revealing Excellence model of ability, which is fully supportive of alternability, and which seeks to stop people from doing what they're useless at and to redesign the entire structure of the workplace around what people are good at. 

 

There is, thanks in part to new EU directives which call for broader interpretation of the laws on disability in employment, now some helpful case law (the Southampton College Employment Appeals Tribunal (EAT) case (2005) (see TUC disability employment guide (available free from them) which establishes that, in restructuring situations, employers have to consider creating new jobs designed around disabled employees needs. 

 

A key task now is to extend this from restructuring to all situations.

 

Appendix 6

 

Key quotes and principles informing this document: 

 

1.   St. Photios the Great, Patriarch of Constantinople:  

 

“The greatest act of love is to tell someone the    truth”.

 

2.   St. Maximos the Confessor, who still managed to speak, despite having his tongue cut out by those who persecuted him, including all five ancient Patriarchates then in existence:

 

“To fail to tell someone they are in error is an act of hatred”.

 

All 5 patriarchates were eventually persuaded that St. Maximos the Confessor was right to condemn Monothelitism. The editor humbly hopes that between us we may also find what is the right course of action. 

 

This document tells the truth to the best of its ability and is therefore intended as an act of love. It tries to avoid acts of hatred. The editor humbly apologises for any way in which it falls short.

 

APPENDIX 7 DRC NEURODIVERSITY GROUP MANIFESTO OF NEURODIVERSE PEOPLE (Drafted by Adrian Whyatt and accepted unanimously and unamended by that group in 2005)

 

NEURODIVERSITY MANIFESTO

 

TWO IN THREE – ALTERNABILITY AND UNLEASHING THE  TALENTS AND ABILITIES UNIQUE TO NEURODIVERSE PEOPLE (NDS) TO CREATE "A BETTER LIFE FOR ALL"  BY

 

USING INVEST TO SAVE AND OTHER PROGRAMMES TO LOWER TAXES AND IMPROVE SERVICES FOR ALL 

 

BY INVESTING IN NEURODIVERSITY (THE OFTEN OVERLAPPING DEVELOPMENTAL VARIATIONS OF DEVELOPMENTAL DYSPRAXIA (10%+ OF THE POPULATION), DYSLEXIA (10%+), DYSCALCULIA (5%+), ATTENTION DEFICIT HYPERACTIVITY DISORDER (ADHD) (4%+), TOURETTE'S SYNDROME (1% ) AND ASPERGER'S SYNDROME( 0.9%) AND RELATED CONDITIONS, TOTALLING 15%+), TO ENABLE ALL NEURODIVERSE PEOPLE (NDS) TO MAKE A FULL CONTRIBUTION TO IMPROVING OUR WORLD  FOR EVERYONE.

 

A problem that affects all of Society – in terms of greatly worsening the situation in terms of Crime, Anti-Social Behaviour, Drugs, the Environment, the Health Service (including hospitals and GP services), Transport, Education (including Schools) and the Economy – is the lack of neurodiversity friendly policies 

 

The Government has pledged to be "tough on crime, tough on the causes of crime" and its current mailing, "A Better Life for All" asks which of the above issues are the most important either facing Britain or in one's own area. 

 

The author, Prime Minister Tony Blair has acknowledged the importance of "being tough on crime and tough on the causes of crime". David Blunkett acknowledged in a speech at the 2004 Labour Party Conference "mental health" and "drug problems" and "dealing with the causes and not just the symptoms". 

 

"Drugs testing and treatment" are important in tackling crime. Higher incidences of drug taking and addiction have been linked to ADHD. 

 

But, all politicians need to unpeel the onion further. Over 67% of prisoners are neurodiverse, well over 4 times their share in the population. None had been diagnosed, according to a 1997 study by Madeleine Portwood at Deerbolt Young Offenders' Institute. 

 

In terms of the Health Service, although there are very isolated examples of good practice, there is little or no understanding of neurodiversity, and worse, a great deal of misunderstanding, resulting in a far greater waste of money on mistreatment, complaints, accidents and frustrated assaults on staff than the cost of having proper nd services. Nds face ignorance, or worse, disbelief and antipathy. Underlying characteristics and problems of neurodiversity are often mistaken for depression and/or laziness and/or deliberate rudeness. This may not be helped by the notorious prevalence of dysgraphia (appalling handwriting and sometimes problems with drawing) (a form of dyspraxia) amongst doctors. 

 

Misdiagnoses of schizophrenia, instead of Asperger's Syndrome have notoriously resulted in the mistreatment of people and their incarceration for 10 years or more in Broadmoor, as in the Piers Bolduc case. 

 

Unsurprisingly, other forms of social exclusion are overrepresented amongst neurodiverse people. A study published in 2003 by the College of Occupational Therapists showed that over 80% of dyspraxics diagnosed after the age of 7 showed negative social outcomes (including mental health problems, unemployment, homelessness, substance addiction and/or abuse by the age of 23) compared with only 13% of the general population.For those diagnosed before the age of 7 and given full support, negative outcomes were in line with the rest of the population. It needs to be added that many nds are not diagnosed until well into adulthood (including sometimes even in their 70s or 80s) and the majority are not diagnosed at all, often being (mis) diagnosed with (secondary) depression. 

 

Most nds do not even know what neurodiversity is, let alone that they have it. 

 

What is needed in general political terms

 

This was recognised at the Liberal Democrats' Spring 2004 London Conference which unanimously passed a motion on "Disability, especially developmental neurodiversity" noting the huge prevalence of undiagnosed neurodiversity amongst inmates and including a pledge "to work with user-led and other organisations, including the Police, Transport, Housing, Educational and other services to help ensure full implementation of policies meeting the needs of all" nds. This also endorsed the British Council of Disabled People (BCODP)'s "Disabled People's Rights and Freedoms' Bill"   which includes support for a Right to Independent Living based on the Social Model of Disability (removing the barriers that disabled people face rather than regarding their needs as a "problem"). We call on all political and other organisations to do the same immediately at all levels of their policy-making and implementation structures. 

 

Nds need, along with everybody else, to see the United Nations' 1991 Paris Principles for Comprehensive Human and Civil Rights in all areas of equality and diversity and other areas of human rights implemented,  right to independent living, which must include the Ten Principles of Independent Living as set out in the Cabinet Office Strategy Unit Analytical Report, Improving the life chances of Disabled People, June 2004, p.160: Information, Peer Support, Housing, Equipment, Personal Assistance, Transport, Access, Income, Education and Employment. In addition, there are specific additional needs which nds and others need, notably: diagnosis and treatment (including for commonly occurring related bowel, allergy and eczema problems; universal tolerance of their differences (not to be called stupid, rude, clumsy, lazy, be mistaken for people with depression); social integration (including social skills training, including for intimate relationships where necessary); and for a supported, structured diet for the many nds who have specific food processing problems, intolerances and allergies as part of their neurodiversity (especially of gluten and milk products); sensory processing differences, e.g. with screening out noise . Above all to be believed when they talk about their problems.

 

Advocacy needs to be guaranteed through the implementation of the 1986 Disabled Persons Act, sections 1-3, and needs to be nd-specific. 

 

We support all human rights initiatives, except where these conflict with nd rights and needs.

 

Where specific action to help nds is most needed now

 

1.      Comprehensive assessment and diagnosis on the NHS, especially for adults for whom this often tends to be almost or completely impossible (let alone getting proper treatment) as the medical profession tends not to recognise their problems. This needs, very rapidly, to be moved into a comprehensive screening programme across the entire country. 

 

2.      Help with claiming benefits (e.g. disability living allowance and incapacity benefit). Many welfare agencies do not know the implications of their problems. 

 

3.      Help with getting disabled person's freedom passes, taxicards and other disability rights and entitlements. For example, many have a statutory right to a disabled person's freedom pass under the Transport Act 2000, s.150 as they cannot drive safely to the standard required by the DVLA. Some find it difficult to travel by public transport because they find it hard to cope with noisy, busy, surroundings.

 

4.      Support in getting and keeping employment. Nds need reasonable adjustments, such as a quiet room to work in.

 

5.      They may have special housing needs, e.g. a quiet environment and occupational therapy support to help with organisational and/or co-ordination problems. Local authorities and Housing Associations tend not to recognise most types of neurodiversity as disabilities, especially dyspraxia and dyslexia. 

 

6.      Specialist trained advocacy, especially for adults 

 

Where nds can contribute – the alternability model of talents and abilities   

 

An alternability is a characteristic which makes someone superior at some things while at the same time being inferior at other things. All nds are alternable. Nds are "extreme machine human beings" making them far superior to non-nds (neurotypicals (or nts) at some things, and inferior at others. Nds tend to be far more creative than nts and all of the most creative people are nds. Dyspraxics, as non-sequential thinkers will be inferior at sequencing, let alone sequential multitasking, but markedly superior at the lateral thinking required for brilliant strategic thinking. Some nds are brilliant at higher level maths but hopeless at languages or vice versa, but have great difficulty in getting from A to B (or can not get there at all without help). "Alternabilities" are most common amongst, but not confined to, those in the highest 5% of IQ. 

 

 

APPENDIX 8 The UPIAS Bias Update – or some thoughts on how the origins of the disabled people’s movement in organisations such as the Union of the Physically Impaired Against Segregation (UPIAS) have continued to distort public policy about disabled people and to exclude and/or marginalise other groups of disabled people in the disabled people’s movement itself, especially “new groups” such as neurodiverse people fighting for recognition (INSERTED BY Adrian Whyatt)

 

APPENDIX 9: FORMAL ENDORSEMENT FROM THE MENTAL HEALTH ACTION GROUP (MHAG) DISABLED PEOPLE’S ORGANISATION OF THIS  DOCUMENT  WITH AMENDMENTS (Inserted by Adrian Whyatt)

 

 

The UPIAS Bias Update

 

The reason for writing this is the need to counter the biases and perceptions of all too many who continue to dominate the "disabled people's movement" and who are, in the words of one prominent member of the disabled people's movement, a wheelchair user who wishes to remain anonymous, "so far up their arse that they don't realise it". This person then went on to add that their own experience of bringing up a family member confirmed pretty much everything that DANDA has submitted on the subject of neurodiverse people and our needs. 

 

What was UPIAS?

 

UPIAS was the Union of the Physically Impaired Against Segregation. It was founded by some spinal injury survivors in the fabled era of the '60s and early '70s disabled people's movement. They were all wheelchair users who were quite rightly disgusted by the way wheelchair users were treated by society in general. 

 

A leading light in this, who then went on to help found the British Council of Disabled People (BCODP), was Vic Finkelstein, who became a wheelchair user as a result of a spinal injury sustained playing rugby in South Africa in the early '60s. He demonstrated against apartheid and was ultimately exiled to Britain in the late '60s taking his civil rights activism with him, including using the analogy and experience of other civil rights movements. 

 

What is the UPIAS Bias?

 

However at the time it was set up the majority of UPIAS members failed to make common cause with the other movements of disabled people, such as the Deaf and the Blind and Mental Health Service Users and Survivors, let alone People with Learning Difficulties (previously known as Learning Disabilities and at that time more commonly known by the horrible term Mentally Handicapped), and never mind people with dyslexia and other learning and social interaction differences (neurodiverse people or nds). 

 

All of these groups have been fighting to get in. It does not help either that there are deaf people and dyslexic people who are in denial about being disabled. But the disabled people's movement is still dominated by people who are wheelchair using spinal injury survivors. Many of them seek to deny in practice and sometimes even in theory, the specific needs of neurodiverse people. 

 

In the words of David T. Mitchell, PhD, Associate Professor, Director of Graduate Studies, PhD in Disability Studies Program (MC 626), University of Chicago at Illinois, speaking in December 2004 at the London Disability Film Festival Panel Review, in response to a denial from the organisers (all people with apparent impairments) that dyslexia should be included in the Festival: "the Disabled People's Movement has a history of groups being excluded and having to fight their way in to be included". This is the UPIAS Bias. It helps to make the underfunding of disabled people's organisations even more inequitable by promoting the kind of fractiousness which means that people do not want to fund the disabled people's movement and even less the unfashionable groups such as ourselves whom others do not want in. Research by the Direct Action Network (DAN) found that 96% of voluntary sector funding went to organisations not controlled by disabled people. 

 

We say: if it does not include neurodiverse people and their organisations, and meet their consent and met their needs, then it is not valid disability policy because of our sheer numbers (15%+ of the entire population). 

 

Testing a document, etc for UPIAS bias

 

Documents on general disability policy need to reflect the prevalence of  different disabilities in the general population by explicitly naming their prevalence and including them proportionately in their examples. 

 

They also need to show the reality that 80% of disabled people have more than one disability. 

 

They must show that non-disabled people are in fact only pre-disabled.

 

They must explicitly shoot down stereotypes. They must show the reality that over 70% of impairments are hidden.

 

They must show that Dyslexia and developmental dyspraxia are over 20 times as common as wheelchair users and that there are only 10,000 Braille users in the country. 

 

Attitude to open plan environments

 

All conversions from a closed plan environment (accessible for neurodiverse people) into open plan environments are to be opposed, even if it means that they become "wheelchair accessible", "deaf accessible", "blind accessible", "partially sighted accessible", and "learning disability" accessible. BECAUSE, put together, all these groups are less common than neurodiverse people. Also, at least 20% of the people who are members of this group are themselves neurodiverse. 

 

Historical justice

 

Given the historical and continuing exclusion of neurodiverse people, special efforts to build capacity are absolutely necessary.

 

It is also essential that the total unacceptability of the UPIAS bias of the disability (and political) establishment and their propensity to exclude neurodiversity is made clear. 

 

The environment was far more accessible for most neurodiverse people 100 years ago than now. This continued worsening of accessibility and deeming the environment "accessible" when it is not for neurodiverse people, is unacceptable. Likewise, obsession with "multitasking" as opposed to legitimate "specialisation" as well as an obsession with just about everyone doing their own administration. 

 

THEREFORE EACH AND EVERY DOCUMENT, CONSULTATION, ETC., MUST BE TESTED FOR UPIAS BIAS. 

 

Copyright Adrian Whyatt, 2005. Under copyleft principles general permission is given to quote from this and to use any concepts in it, including that of UPIAS BIAS, provided that acknowledgement is made and there are no distortions to the meaning of any concepts or to overall meaning.

 

APPENDIX 9: FORMAL ENDORSEMENT FROM THE MENTAL HEALTH ACTION GROUP (MHAG) DISABLED PEOPLE’S ORGANISATION OF THIS  DOCUMENT  WITH AMENDMENTS (Inserted by Adrian Whyatt)

Hi Adrian

These amendments look OK to me.

We would be delighted if your could become a co-opted member of the Board of Trustees immediately, with a view to standing for election as a Trustee at the next AGM.

David [Glennister, Chair,  MHAG]

 

From: Adrian Whyatt [mailto:adrianwhyatt@gmail.com]
Sent: 24 September 2007 19:19
To: solidoak@solidoak.karoo.co.uk; Mental Health Action Group; Colin REvell; adrianwhyatts.colinrevcor1@googlemail.com
Cc: GLAD2007GreaterLondon ActiononDisability; m.goring@ntlworld.com
Subject: Fwd: Your formal endorsement to this document sought (with any reservations/amendments by email by Tuesday am (after telling me over the phone). I will ring you at 12 noon to see how you are getting on. Was... Urgent additional new information & will

- Hide quoted text -

 

Fwd: Your formal endorsement to this document sought (with any reservations/amendments by email by Tuesday am (after telling me over the phone). I will ring you at 12 noon to see how you are getting on. Was... Urgent additional new information & will go out Tuesday or Wednesday...was...Amendments in response to criticism. Comparative documents. 

 

Dear all at MHAG

 

Please see above. I know you already support the Charter, which is acknowledged in the document. If this is not enough time, then please let me know whether or not you support the following key recommendations:

 

1. It is to be a "Living Document" which is to be updated regularly.

 

2. To ensure accountability to disabled people and our organisations, a Neurodiversity & Autism Action Group (NAG) Implementation (& Development) Group will be set up.

 

3. Independent Living (as defined in the Charter) is to be the main goal. Within this three of the most key areas for action include:

 

3.1. The Accessible Environment (in the broadest sense, including Homes, Transport, Offices, Places where services are delivered, shops, Places of Entertainment, Places of Worship, other working and street environments, etc). 

 

3.2. Health (including metabolic testing)

 

3.3. Advocacy (in all its forms).

 

Yours

 

Adrian

 

P.S. Colin has asked me to confirm whether or not I am willing to become an MHAG trustee. The answer is, of course, yes. But, of course, that is up to you and I am willing to do whatever you feel is best.

 

P.P.S. My email is still down and is likely to remain so for the rest of the week. So, I am using a TU internet cafe when I can. I won't be able to access it tomorrow and will have little time to access it on Wednesday & Thursday because of a major Orthodox Christian feast, followed by the AGM of Hammersmith & Fulham Action on Disability (HAFAD) (Thursday 2-5pm) of which I am a trustee. 

 

 

Re: Urgent additional new information & will go out Tuesday or Wednesday...was...Amendments in response to criticism. Comparative documents.

 

Cc. Colin Revell, mediator

 

Dear Jo

 

As you know I would like us to "speak with one voice". So, I am happy to delay sending it out (conditionally) until Tuesday or Wednesday. But, as you also should know, in the words of a famous trade unionist: "If you surrender all of your principles to gain office, you have office, not power".

 

Hence, as long ago as last March I reiterated that there were "bottom lines". In writing. This was confirmed in person and in writing repeatedly, including in August.

 

That position has not changed.

 

Also, in formulating my response I have the right to consult whom I like. The MHAG document has already gone out to Norman Green, NAS Company Secretary, to form part of items for the NAS to consider in a short notice meeting with the Department of Health. It is stand alone in any event. 

 

In addition, I received a copy, in my post box when I got home last night, of the DRC's Celebrating the Journey, its legacy document (also available at www.celebratingthejourney.org.) On p.38 it has the following statement:

 

Autism and Neurodiversity Action Group

 

"The DRC pioneered the establishment of this Group concerned with strengthening the rights and prospects of people with autistic conditions and neurodiverse conditions such as Asperger's Syndrome, ADHD and aspraxia. The Group has advised on a range of DRC services and policies and has set out a statement of proposed commitment and action for the future."

 

"Aspraxia" is clearly meant to be dyspraxia, but the general public wouldn't know it. Unlike with the Learning Disability Action Group and the Mental Health Action Group, where there is a detailed description of what they have done, and pictures of the groups (naming all the members), whether present or not. Differences must replace conditions. This must also be amended to "dyspraxia".  Dyslexia, dyscalculia, Tourette's syndrome, and acquired neurodiversity (after strokes and brain injury) and degenerative neurodiversity (a feature of stages of conditions such as Alzheimer's, Parkinson's Disease and MS, etc) must be added. And some of what we have done (especially MHAG's declaration, the Conference results and ICE). In addition it should be stated that, for example, the Liberal Democrats now use neurodiversity in some official documents, such as Conference Access Group reports.

 

There is space for all this on p.38.

 

Actions speak louder than words, always. 

 

I don't especially care who is attributed overall authorship as long as each section and contribution is correctly attributed to the person who wrote it.

 

I regard my own contribution, apart from any typing errors and remarks which directly criticise individuals, to be non-negotiable. If there are differences of opinion they must be honestly stated as items for debate. 

 

I am taking on trust any amendments you make to the original document you have presented, which should go after my initial introduction setting the overall scene.

 

Noone else has objected to any of my additions, other than the things already amended, apart from being, in one instance, slightly unclear about who had authored what. Perhaps the logical thing would be to state that the beginning, "Setting the Scene" was drafted by me, with input from others, and that the main bulk was drafted by you, except where otherwise attributed. With attributed amendments.

 

It is imperative to remember that we are talking on behalf of everyone in the neurodiverse community. I am not out for personal glory, but do want to see the copyleft principle of correct attribution followed.

 

Finally, I am glad that we managed to talk more calmly yesterday and want to thank Colin Revell especially for all his support.

 

I will need to be able to see the results of your meeting with Bob Niven by Monday night in time for me to access it at a library or at an internet cafe on Tuesday and then to talk to MHAG. I will be out all day Sunday and am attending an important meeting (the Son-Rise programme) on Sunday evening.

 

However, I hope to be back by 10 or so on Sunday evening.

 

It is important to remain calm in all this and to realise that my concern is to make sure that as much action as possible happens following the closure of the DRC. I will also publicise whether or not the group has "sold out" by rejecting the broader disability and disabled people's and social inclusion agendas.

 

We have to ensure that our agenda is not watered down. 

 

It is my intention to present whatever report I agree to to the next NAS Council meeting. I also already have an offer within the Disabled People's Movement to have it published on the website of one of their leading organisations. Come what may.

 

Hope this helps to clarify my position, which I feel is reasonable under all the circumstances.

 

Yours sincerely and with fond regards

 

Adrian Whyatt, Chair, GLAD. In an official capacity.

On 9/21/07, Jo Todd <jotodd@key4learning.com> wrote:

Hi Adrian  

Thank you for this - just got in from work and have another meeting to go to wont be able to put in my amendments till Sunday hope you will be kind enough not to send anything. I will do it on Monday as agreed with Bob I would  also like to discuss with you others I will to send it when it has all views are expressed. This is what we discussed on the phone there is no point sending it unfinished when all information is not in the document. Two documents will also dilute the message lets speak from one agreed document. Hope this is considered a reasonable request as I am the primary author with the rest of the ND group.

Regards

 

Jo Todd

jotodd@key4learning.com