A little lesson in linguistics, or the people first shibboleth.

Chomsky notwithstanding (who talks of a technical reconstruction of syntax rather than a pedaogogical grammar ) The reality of  grammar in terms of "people first" language means less than the actual usage and it's connotations. That is to say the communicative intent and how it is understood in any particular community always takes precedence over any strict 'by the book' rule

I do not have sufficient knowledge of comparative linguistics to really analyse the way things can be said in languages that don't permit the same grammatical forms and alternatives as English. The very flexibility of English as a polyglot language encompassing more one grammar and vocabulary is partially what allows these distinctions, though the distinctions would still exist independently of language, only un-named and categorised, the fact that something is either named (or described) or not being in itself indicative of the social status of such a difference being expressed in the alternative forms

Anyway consider this description

"I am a convict."

That sounds pejorative -  I am someone who has been caught committing a crime and have been sentenced.

However, as any thesaurus will tell you, conviction bears alternative meanings. Consider further for example

"I am a person with conviction"  or "I am a person with convictions"

Very similar phrases we the second being merely a plural of the first. However but the context and conventional usage makes other distinctions. For instance the connotations of the first are fairly unambiguous that I am a person who 'is convicted, or convinced, a person who holds deeply entrenched beliefs  the most common instance being religious convictions. On the other hand the second phrase does not so readily (although it can) add a plural to, introduces an ambiguity that implies I am more likely to be a person who has been through the courts than a person who has more than one set of strongly held beliefs.

I can use a similar phrase using a similar word.

"I am a conscript" Which would be clear enough to understand that I am a person who has been conscripted into the armed forces, but to say I were 'a person with conscription ',  'a person with a presecription' or even 'a person who has a conscription'  that would appear to be rather nonsensical since the English language does not use a noun conventionally to describe the state of being conscripted,  conscription referring to the process rather than any single artefact one can posses like a 'prescription'

Turning it around then I could say though that I were a person with a prescription, but not a person with prescription. I can be a prescribed person though, which is entirely different to being a proscribed one, it's close homophone.

Well getting round to the argument by a difficult route.

I can be a described person and equally a person with a description. Disability or Autism being in this instance of the category 'description' not 'entity'

What all the foregoing really demonstrates is that there are no hard and fast pedagogical rules, only conventional usages and understandings one learns and uses in context. It's more idiom than strict grammar.

In the wider scheme of things it has nothing to do with any grammatical difference in the meaning if the adjective comes before the person, or after, because formal rules allow either. However the social use of language has determined something beyond grammar in determining whether a person is a disabled person, or a person with a disability because those two differences are in a sense shibboleths which determine or betray a lot more than the meaning of the phrase itself.

I have searched hard for a succinct summary of the difference and the best I can find comes ironically from the last place one would expect a style guide for 'political correctness' the Rugby Football league's style manual.

"Disabled people / person /spectator is the preferred term and the term used by the RFL as this reflects the social model of disability which emphasises that people with impairments are disabled by society not by their impairment. For example “Wheelchair users can’t use the facilities because the venue is inaccessible; therefore, we need to modify the building and the services we provide.”

The social model was not developed as some form of “denial” of impairment, it was developed in order to inform society, which includes disabled people, of the real reason that individuals are not able or allowed to take a full and active role in society. It follows then, if society in general, organisations and those individuals working within them acknowledge, understand and implement the ‘social model’, there would be far less discrimination against disabled people and greater access to services and the society as a whole.

Person with a disability is a medical model perspective which implies a person’s impairment or medical condition causes the disability. You firmly attach the disability to the person with this phrase when it’s not it’s with society. For example “Wheelchair users can’t use the facilities because of their impairment, as it prevents them from getting up the steps at the entrance of the venue”.You will come across many people, disabled and non-disabled, who use language we advocate avoiding i.e. people with disabilities. Firstly they may not know about the social model but also may choose to be referred to in a particular way. Where it is not appropriate to challenge (sometimes it will be) promote the use of preferred terminology through your own use and certainly in any marketing material that is produced."

Further musings on why 'people first' language is merely a pretence that enshrines discrimination rather than confronts it can be found in Jim Sinclairs classic piece which bears repeating in full:

"I am not a "person with autism."   I am an autistic person.  Why does this distinction matter to me? 

1) Saying "person with autism" suggests that the autism can be separated from the person.  But this is not the case.  I can be separated from things that are not part of me, and I am still be the same person.  I am usually a "person with a purple shirt," but I could also be a "person with a blue shirt" one day, and a "person with a yellow shirt" the next day, and I would still be the same person, because my clothing is not part of me.  But autism is part of me.  Autism is hard-wired into the ways my brain works.  I am autistic because I cannot be separated from how my brain works.

2) Saying "person with autism" suggests that even if autism is part of the person, it isn't a very important part.  Characteristics that are recognized as central to a person's identity are appropriately stated as adjectives, and may even be used as nouns to describe people: We talk about "male" and "female" people, and even about "men" and "women" and "boys" and "girls," not about "people with maleness" and "people with femaleness."  We describe people's cultural and religious identifications in terms such as "Russian" or "Catholic," not as "person with Russianity" or "person with Catholicism."  We describe important aspects of people's social roles in terms such as "parent" or "worker," not as "person with offspring" or "person who has a job."  We describe important aspects of people's personalities in terms such as "generous" or "outgoing," not as "person with generosity" or "person with extroversion."  Yet autism goes deeper than culture and learned belief systems.  It affects how we relate to others and how we find places in society.  It even affects how we relate to our own bodies.  If I did not have an autistic brain, the person that I am would not exist.  I am autistic because autism is an essential feature of me as a person.

3) Saying "person with autism" suggests that autism is something bad--so bad that is isn't even consistent with being a person.  Nobody objects to using adjectives to refer to characteristics of a person that are considered positive or neutral.  We talk about left-handed people, not "people with left-handedness," and about athletic or musical people, not about "people with athleticism" or "people with musicality."  We might call someone a "blue-eyed person" or a "person with blue eyes," and nobody objects to either descriptor.  It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.  I know that autism is not a terrible thing, and that it does not make me any less a person.  If other people have trouble remembering that autism doesn't make me any less a person, then that's their problem, not mine.  Let them find a way to remind themselves that I'm a person, without trying to define an essential feature of my personhood as something bad.  I am autistic because I accept and value myself the way I am." copyright Jim Sinclair 1999

The wheat and the chaff

In any system there is always a level of noise that interferes with the essential communicative process, at some point the noise becomes so severe that any message is liable to become swamped by it.

It pains me to do this, and I know what the reaction of those who will suffer most from this decision will be, but I am going to employ much stricter moderation on this blog from now on.

There is level of debate below which nothing is served by prolonging it. I am not trying to convince those who are dyed in the wool in their opposition to change there ways, that is, short of a miracle, impossible. Neither is my blog aimed at the convinced on the other side, I have no need of merely flattering egos in a mutual support club.

My aim is to appeal to the middle, ground, the as yet unconvinced in any direction, and in order to do that I have to filter out the noise.

It is a blog owners prerogative to allow what posts xe will, and there are many out there who are so strict they brook no opposition at all, which of course equally leaves me out when I try and comment on that territory.

I have to say enough is enough, and realise that those whose monofixated rants which end up as no more than prolonged 'bar room' 'Punch and Judy' arguments have no place in the comments section here. Those who left out cannot in any event claim discrimination as the internet and the blogosphere gives them ample chance to continue thosee arguments elsewhere. I happen to believe, not without reason that they are not sufficiently convincing in any case to gain an upper hold on any reasonable legislature or academic consensus, and so I will leave them too it in the 'flat earth land' populated by straw men and over emotional demagogues.

The matters I wish to discuss are far too important for the serious players to be put off by that level of noise.

I want anyone posting here to feel secure in the knowledge that their reason and sensibility will not be assailed by pointless and petty 'grudge' arguments, nor grade school scientific howlers adduced to support unsustainable hypotheses.

Campaign to end discrimination in human fertilisation (update)

Readers may recall a recent blog post, highlighting a particular incidence of such discrimination here and now, and may recall my intent to do some wider campaigning around this issue and wonder what happened.

Well academic work got in the way, that is what happened. However it is time to become active again and provide an update.

To begin with the expected response from an email campaign to contact a number of prominent researchers and names in the field of autism exacted a very poor response. This maybe because the email header was caught in too many spam filters, it maybe that the header sounded like an appeal for funds, not an appeal for action. It may also be that those I sought to contact were equally as busy as me in their academic endeavours and would need reminding. This latter I do intend to pick up on notwithstanding using other methods besides email to prompt a response, especially where the opportunity presents.

The second part of this report deals with the biotethics debate I attended recently. This too was caught up in delays and was postponed from it's original date to a date earlier this week, which fortunately for me co-incided with a stay in London.

The conclusions of the debate even for me with only a lay understanding of genetics, seem pretty clear. Any claims that any disorder has a single or a simple universal marker is very much contrary to the research that is going on into both the genetics and the etiology of various conditions as diverse as bipolar, autism, or Schizophrenia even if the current categories are in themselves sufficiently robust (which is another story)

That does not however mean on the other hand a charter for every crank with an environmental or dietary axe to grind. Matters are complex that is all, and whole books could be written on the complexity.

What is evident to me r is the dangers that are presented from over simplistic reporting of the research, whatever direction it is taking. Journalists like simple headlines, they like certainty not a series of unknown unknowns, and unfortunately those sponsoring the research often want to grab the headlines to, to the consternation of the people actually undertaking the research as this is all part of an economy of academic league tables and journal impact factor.

Often preliminary research findings will be reported before they have been published in peer reviewed journals, indeed sometimes the research is never published at all because it has been found wanting in various ways but the headlines remain.

One need not mention the classic example of Dr Wakefield's now withdrawn and discredited study as an example, there are many others out there whose results are not as conclusive as the headlines suggest, or that do not even say that the headlines suggest.

The problem is however that people do act on these conclusions, companies do offer genetic tests, insurance companies do revise their actuarial schedules, and discrimination of the kind that first drew my attention to this issue does occur.

Denial of equal rights to be the progenitor of a child on account of a false understanding of the science by people who really ought to know better.

What is the solution?

I think at one level it is for researchers to show more responsibility for the way their research is interpreted. For funders and academia likewise.

It is important for ethics review bodies to add an additional dimension to the considerations of any experiment or study. To go beyond the immediate concerns of the participants, to consider the effects it has upon those who have not chosen to be part of the study, but who are nonetheless implicated in terms of it's outcome.

I propose various actions to further this as a campaign and urge people on all sides of any particular divide over "neurodiversity" to give this equal worth, some fights are too important to let our individual differences of opinion get in the way. Bad science is bad science, and bad reporting even worse because it has implications for us all.

Anyway watch this space and keep watching, more will follow....