Sunday, August 21, 2011


Never mind the internet, never mind the "modern" or if you prefer "post modern" world. We all have connections.

Last night while searching for something else I came across Nasa Begum's dissertation. "the burden of care"

The reason why I have a copy is because Nasa was a courteous and responsible researcher and made sure that those interviewees who contributed to her study had a copy. One of them was my mum, and so in turn I inherited that with her papers.

It is sad in many ways, not only that she did not even live as long as my mum did, but for me to be confronted by what was in that research. I had never bothered to read it before, but last night I did. For all the conventional anonymisation I knew which interviewee was my mum, and what is worse I knew she was talking about me. It's one of these times when I count autism as a blessing, and I think there is even a hint at my autism in there, for whilst she describes things that were difficult and embarrasing for her as a recipient of care she says that I would not "bat an eyelid"

Indeed I wouldn't but I have some retrospective emotions to see how much it bothered her to have to receive the kind of personal care that she needed. She was not born a "disabled person" and that's the difference between us, a difference she once pointed out to me. I can accept so much more because I learned so much from her. Then again it's what they call a "two way street" I think quite possibly that I taught my mum a few things about the acceptance of "difference" anyway.

However to get back a blog or two, the one thing where my mum and I are perhaps closest is that never mind all that serious stuff in Nasa's study we laughed together. Pain is such a strange phenomenon that I don't know whether I have more, the same, or less than she did now. She was not a neuroscientist nor a philosopher and I have pretensions to both so that gives me even more to laugh about I suppose. One thing is very clear from my reading and it was painful in the psychological sense. That is the reading in Nasa's study of  psycho-social element of disability. My mum learned in a harder way than I did because I have benefited from her learning.

Before I leave the topic entirely I'm going to generalise a bit, no doubt i'll get four years in jail if I caught doing this, but I have to say this, and turning the subject towards the conventional narratives of autism from a parental perspective, you will often read the "pain" of the mother because the child supposedly "cannot" or does not say "I love you mummy"

Damn it all, I may never have said those words, but did I never demonstrate it?!!!!!!

 The "burden of care" was difficult for us both because it oscillated in different directions, towards the end of her life she understood more, those complications. I did what I did because it was necessary and would for all the world that others would do so and cut the social crap and embarrassment over it.

Harvard Referencing

I do not doubt that I have had a grumble about the necessity for this in the past, however I was recently reminded of a time when it would have been useful.

I was responding to a post in a research list and referencing my memory of an article I had referered to in a report which in turn had referred to a study, all this back in 1987 before google and the internet mind you.

Now that is vague if you want to find the original. My first fault, though I cited the publication back in my 87 report, was that I did not give the issue number nor the date, which means that you would have to search perhaps a year prior to the date of my report in order to get it. Of course it was an in house journal, and whilst I certainly did have copies of it back then, I have long since consigned them to the trash bin to make room for more journals. (I do not live in a library though it sometimes looks like it)

Next problem, whilst the journal referred to a study, did that give a proper citation in turn? Much googling has failed to turn up the original study, but suffice it to say it was undertaken in Los Angeles, sometime before 1987 and it was an investigation of the measures that the transit authority had put in force to ensure that drivers of the adapted buses did not make excuses to leave wheelchair using passengers stranded (lift not working etc.) There was a fair amount of activity in the States regarding accessible transport back then, and it showed the way for us in the UK.

That study is out there somewhere, my memory will not be faulty on that subject. Failing a copy of the journal which cited the study, I could hunt it down in a library if I really needed (I probably will)

But all that would be unnecessary if I had adopted the academic rigour that is forced upon me nowadays. Perhaps I have protested too much.

It's an anecdote that is not irrelevant to world of peer reviewed journals, science and the citations game, because the further back you go, the less rigour there is, it's not just me. What I wrote was adequate at the time for the joint local authority/health group who commissioned the report, it passed muster for the Department of Transport hearing where my mum presented it, and the West Midlands Passenger Transport Executive committee where I subsequently presented it.

The "facts" are that a lot of poorly referenced material has entered the mainstream through such means and anecdotal evidence has been incorporated into later fact without data checking. Not everyone who has referenced something in a paper that has then gone on to be cited again and again has had as reliable a memory for facts as I do and of course I could cite an example of that. I already have elsewhere :)

Oh well, I'm off to Autscape again, and I will be presenting there. It's not so much of a paper, and certainly not academic, as a number of supporting arguments for a general discussion. I will no doubt be making all manner of ad hoc references. They will all be there somewhere to google I expect as I'm not breaking new territory.

Some of the people who have written on the subject before me, have hardly been original either, they can't cite accurately because to do so would expose plagiarism, that is the way our utterances, in the blogosphere, in advocacy mailing lists and I dare say even in off the record private conversations, have been claimed, by the sociologists and historians who have been carefully colonising our autistic world.

I don't even know exactly what I am going to say, I only have a rough map, and I certainly don't know what the responses will be. Exciting isn't it..

Thursday, August 11, 2011

Disability Assessments and stuff

Yes I can hear the sirens howling even now that I am one of the intellectual elite studying at a fancy University and I ought not to grumble, but when did that ever stop me. Yes I know my blogs get more esoteric by the bushel (whatever that is?) but heaven forbid I should write anything about "les evenements" and be thought of as a would be looter if I could just get it together to start a "riot" in this rather forgotten neck of the woods where there isn't much left to burn down anyway since the pub went up in flames ages back.

Anyway my sermon for today is taken from Student Finance England. 

Earlier this year, that august body assumed responsibility from the Local Authority for my Disabled Students Allowance.  It's been a bureaucratic nightmare ever since, what with lost papers to begin with, then lost identity numbers and finally not coughing up for the goodies in terms of paying for support that I had arranged and finding excuses not to pay for whatever post grad development course they considered I did not need to go on to the extent that I had to find alternative funding to do the most recent one (I picked up the certificate for completion of that one just today).

So it was decided that the best strategy for me, since things had changed so much since I started Uni (briefly) as an undergrad for what was at the time a rather different kind of course to the PhD I am pursuing now, was to go for a completely fresh assessment, which I had rather late in the summer for convenience, but what the heck.

I thought that would be an easy enough process and it would become much clearer as to what I needed but was it? I have to confess I wasn't any happier with that assessment than the one I had back in 2006 when I was still at Hereward College in rather different circumstances. It still seemed to be rather menu driven and concentrating on equipment and software rather than human support and the additional transport costs I have been struggling with.

Anyway with the aid of my key support worker at Uni (paid for out of the allowance) I was able to amend the initial report and yesterday I got a letter from Student Finance England to say that they had agreed everything ...  but I should be aware that the total amount allowed to post graduates was lest than the full cost of my agreed support. uh-oh :(

Never mind that had I looked more closely at the letter I would have seen that it referred to the academic year 2010/2011. It just so happens as I reported in my last blog that I have registered for the new year starting in October (although the first instalment of my fees has gone from my bank account already) which is the year 2011/2012. So I am mystified now, was that letter referring to what was left over from the budget for last year or what?

Adding to the complications, I had a letter from them today to tell me that I had not even applied for funding for 2011/2012 as they had rejected my form, being as it was the wrong one. Well to begin with I was referred to the website. (which I had trouble logging onto, technical blunders) for a form on line, but the only one I could find was for full time students only. So I asked them (via the interminable phone menu system) twice to mail me out the proper from. The first time they did not respond, the second they sent me the paper version of that same wrong form. Perplexed as to what to do next I sought advice from my key worker, before she went away on holiday and she was able to email me another different form. That was the one they rejected, as it is apparently only for students who are also eligible for a student loan, which I am not. So eventually I got the correct form this morning, which the person on the phone assured me did not need countersigning by anyone else. Wrong again, on checking it, it needed verification from the Uni as to what kind of course I am on. Fortunately I was going into Uni today anyway, so I was able to get that and my car park permit renewed at the same time.

It looks like I'll never see the end of this. It won't be the first time I have spent more time pursuing finances than actual research. I failed to get a competitive scholarship that would have covered my fees for this year, earlier on this summer despite having a very strong case, there is always someone with a stronger one.

And when this is all finally authorised, I am going to have to sort out a lot of paperwork to actually claim particular expenses for which I will have to furnish more proof than any MP ever has done to verify a mortgage on a second home, crooks the lot of them!

And now for something completely different.

This is going to be a long blog isn't it I've not even come to the trial PIP (Personal Independance Payment) assessment that I voluntarily underwent yesterday.

I could say a great deal about this insidious benefit which seems to me to be a ruse to do away with life time awards that could not otherwise be overturned by replacing one form of benefit with another which is purposefully much harder to get.

It won't effect me in reality until after 2013, and probably given administrative delays and legislative drag after 2014 in my estimation, so I hope the assessment will have changed by then. I really cannot say it takes account of autistic needs outside the home very well at all, never mind inside the home as it is oriented mostly towards physical capacity and only if you are too far gone with Alzheimers to know the day of the week. (although when signing the form I had to check both the month and the year eeek!) will you get it on mental incapacity grounds methinks. Trouble is I anticipated that I would be asked to subtract from a hundred in sevens, and told the assessor that was the next question that would be asked. I was correct, I then said it is simple you take away ten and add three and keep going, I may not know what the date is but I am not that daft.

As far as physical incapacity goes, well you might say I am lucky I have a few of those to throw into the equation. (lucky to have physical difficulties, that's my black humour and I did not spare the assessor any of it either) Well it's not much advantage even if the questions are slanted that way as the trick is if you can do whatever task, be that opening a packet, a jar, getting into the bath, with the aid of equipment then you are capable, never mind how you fund that equipment in the first place. Unfortunately I have bath rails, and use tools to open things, equipment left over from when my mum died that I had kept against the day I might need it myself. So despite the fact that I had an unequivocal letter from the Dr (left over from my DSA assesment) detailing certain physical impairments it will probably be score zero.

Other parts were more difficult for other reasons. Answering honestly was difficult when it came to talking about suicide and self harm, because the assessor, although she said that all the information was confidential and would be destroyed after the researchers collate it, she still had a duty of care to ensure that I came to no harm, that made it a little difficult to talk about the plans for suicide and self harm I have made, but in such a way as to put off either event from the immediate, as a coping strategy in fact even if a little bizarre to some folks way of thinking. She even talked about help available from the NHS to deal with my anxieties, but I had to tell her the truth there, if you are autistic it does not apply, you wait months to see a psychologist who then tells you that they cannot offer anything and then stands well back while you rage! I am too well acquainted with the realities, never mind the theory.

Other than that I think it was still important that I did volunteer even if it gives me little hope for myself as to where and how I will be able to get support when I am told by SFE that I need more than they can pay for!!! I think it was a good thing for me to do because afterward I was able to point out some of those things that are difficulties for autistic people in terms of communication and negotiating social networks that non autistic people take for granted. The fact that I have been non verbal under stress and close to being totally unable to understand language written or spoken, even that won't count for anything because it does not happen all the time, nor the fact that I have been so anxious time and again that I have taken myself to hospital emergency.

Well perhaps I won't be able to contain the desire to self harm much longer, because before the next year is out, I will face yet another assessment one I am also bound to fail because I am alive and can still breathe. Yes that is the dreaded ATOS one we all must face unless by some miracle the Government collapses first and takes the remainder of the Civil Service with it.