Disability and middle life

While re-reading What Katy Did and typing up a review  I realized there were some bits around that which didn't really fit within the review proper and do touch on the politics of disability which is as you might imagine a somewhat contentious area.
I might as well start somewhere by saying for some people disability is acquired thing through illness or some sort of accident, for others it is from birth or early childhood and for some of us we actually have both. The original double jeopardy!
In fairly simple terms there are two ideas of what disability is  one being the rather traditional Medical Model that sees things as what it is the person lacks, sees medical science as providing the Cure to enable living in the able world. You're a problem to be fixed.
The other is the Social Model that while acknowledging the limitation sees it as the product of a Disabling World, where it's the way things as teaching, physical and attitudinal barriers to access, the narrowness of social norms as what disables you. You might have a condition but it's other people attitudes and actions that disable you.
These two sides have been slugging it out for over thirty years with disabled people, carers and those who try in various ways to help caught in the crossfire by various 'professionals'.
Going back to the novel itself a criticism made is the idea you have to positively angelic, almost saint-like, carrying your disability, compliant with how things are.
I think the thing that one has to remember is that was more the late nineteenth century general take on life - be glad of your lot, it could be worse - rather than specifically around how as a disabled person you should in some way change your whole persona.
I think what comes over is something different which is it is about accepting the changed life you have or have to live rather than to be absorbed, wallowing in self pity, to look at what you can do still and the opportunities that may give, making the most of it.
Some may take issue with term "God's School of Pain" used in the novel either from a non-religious angle or for the idea that our father-mother God would teach or otherwise cause a person to change their approach to life though such a traumatic episode in a persons life, feeling it is most unfair.
There is another idea on this which is more the idea you need to be, even are owed compensations from the remainder of society, being gifted opportunities not otherwise available to make up for your life restrictions.
Life is unfair. It is impossible to truly equalize your life and mine or any other disabled persons just by legislation nor is in our wider interest to pursue a line of "Jody can't walk, so she must have the best of everything anyone has to make up for not being able to" having seen a only too real pecking order between individual disabled people and professionals arguing about worthiness and who really is 'more' disabled to get given extras.
While a good argument can be made for providing support and removing barriers which in the novel wasn't explored such as living downstairs and any active therapy, everyday social norms that with more equalizing support at hand need to prevail.
If you study, then you should be expected to apply the same effort as any other student and for any award to reflect your own skills and ability.
You should be expected  to keep your spaces tidy not just for other people but for your own as it is hard for you to function when you can't find or get to what you need, wasting energy you may be short of. Equally if you do have to spend time recovering, then it you need to make it stimulating and pleasant not just so you feel better but it's nicer for anyone that may come to see you rather than austere with just medicines on display. We used to make or affix bright cheerful covers to the backs of our wheelchairs and decorate the arm rests so they were a reflection of us as it's just an extension that helped us get about.
You need to follow regular social conventions asking for and not demanding as of right things that may be of great benefit to you and to which they may be able supply just cos your disabled and you had bad life.
Being a contributor in society isn't  about money, it's about the social capital you invest, the feeling of being alive, the difference you make even you having and meeting the same sorts of responsibilities your non-disabled peers have even if it's sharing in chores.
As a disabled person you won't get everything you want even if you would benefit from it which may seem unfair but when you think about is just as much true for a good many other people who also would of benefited from similar help or opportunities in their lives.
We all have to adjust to these things and in the final analysis, we all need to see what we have, our opportunities, our talents even in changed circumstances and learn to be grateful (not to be confused with mindlessly cheerful) for what we have as the sure fire route to lose the people who can help is not just being too demanding but bad company too.
For what it is worth I feel while both models of disability  have elements of truth they ought not to be seen as competing  because as a person you are more than just a person who lacks certain abilities and you yourself have to recognize their are limits to what people and groups can do to mitigate that.
The problem with saying I have special needs so you need to treat me differently because I can't help being me is that any society needs commonly accepted standards for all to preserve  social cohesion and granting us special rights over those does undermine that.
It has a lot to with the issues people are helping me with personally because it does lead to you not just disengaging with things you could do but the idea everything is for anyone else but you, that ticks off people so in time people disengage with you.
For us to get along ultimately we have to be prepared to follow and learn your rules not impose our own.

Being grown up week

I've been dealing with a few things over the last week, some unexpected, some not but there's a few common things in common to them all.
The main thing has been getting things organized for a couple of days away fairly soon one which was a complete surprise from a friend of mine who is very aware of this whole life of mine to the point of being prepared to spank me where needed so I've had to get the details of that agreed and sort the transportation out as non-driver.
The other is the first of the twice yearly Littles meet ups here in Great Britain over several days where a good number of spend a few days in a rented place having fun in safe secluded environment which was known about but my transportation plans got changed so I've had to stick my Big Girls pants on and co-operate with someone on their timetable so I could get their without running into issues that would put me at appreciable personal risk.
Then as ever on Tumblr a person who I followed for a while switched the Community and tag affinities to one which is more exclusionary so I had message them to see if they were still okay with people in mine following and was informed not so I was required to unfollow them so I did.
The funny thing is at the other account with a different group I have when when I need a more controlled time their they actually added me! Now do you think I can be two totally different persons?
I suspect it just show how much this community label stuff  blinds people to who the person is and the exact nature of what they post.
The thing all of these things have in common is they've required me to act in a more mature way, considering and in some ways giving more priority to their needs and wishes than my own although they are important too.
That I have is a sign of how this life is helping me finally grow up.

Presenting me

I have been a bit busy working on a few things connected with the next littles meet up this weekend which Papa Bear is pleased with apart from a bit of post Christmas tidying up.
The last few days have seen me thinking a bit  about a number of interrelated things and it's really those I wish to talk about today.
Take avatars for instance. We generally see them on forums, social media, chat rooms and so on sometimes as I can well remember when I first got online, you be given limited amount of preset ones by the owners and increasing more allowed you to host one of your own subject to size restrictions then some site had image hosting that integrated that with you with resizing and a choice of 'cut outs' so things didn't have to be square shaped.
What was the point of them?
I'm very much a visual kind of person in that if I'm online I look for a familiar 'face' in a thread or forum that I associate that individual with to the point as some people in a music forum know I don't like it if you change them rather like you change your underwear cos it gets very confusing.
One problem I have is different sites have different image size and shape restrictions and small square shaped one need a fairly simple image to be easily recognized while others allow for long and more subtle ones. I like to standardize an avatar across a group of related sites.
For me an avatar is a personal thing: It's an online reflection of an aspect of me I wish to communicate to people as my 10 seconds of introduction and acceptance to you tailored to where we are meeting up so on one site it's very much my nekomimi side you'll first see while others will be tailored very specifically to it (SN followers will no doubt be smiling at this point!).
Here and on related sites it is different: It is very much about "the little girl within", my very child-like but adult regressed self which just is me because in part of what happened to me apart from those disabilities I was born with, how I see me and my life as lived with nothing sexual in it.
I did touch a bit on it on Friday, but while I don't feel significantly older than I did , that side of me in real life as even in online life too has with a lot of help has moved on being a bit more mature, moving more toward what an actual child of my developmental age would do and think even as the gap between that and a fully mature adult is painfully obvious.

That is one reason why I decided to alter my avatar here: to communicate that change even if  it lacks my beloved Junior Prefects badge.
There were others, some in squared form may of worked better but there was something else, a smiling contentedness in this that is in how I feel that was missing from them while still having something of the era I'm from.
As ever I'll add the last avatar to my list of them on the about page where I talk about their histories and have synchronized a square version with my accounts at GT and IK.

Snowed in Friday musings

Wasn't planning on writing something actually but actually thought I'd type a few words although I may not make quite as many twice weekly editions as I did last year even though I think it'll be a few weeks until I have a 'proper' cycle mapped out.

 There are a few things I am going to be talking about, one is how comments and entries not just on my blog, although as ever so long as they're fit to be printed I'm always happy for people comment on it.
I think there's a difference between talking about something, it might be drawing , an article or a story and what you feel about it and where it is about some technical aspect of it such as missing a small matching bit off a picture or perhaps not the ideal shade of a colour  in picture or a spelling or punctuation mistake in a written piece.
I think we're familiar enough  being set a task at school or college, handing it in  and being graded on it perhaps to the point of a written comment being made the sorts of things I can think of would be "Needs new paragraph", "Should be in red" or even as I had in school "See me" when I didn't really feel like putting much effort into things and things came out of draws *cough*.
Anyway that's fine and dandy for formal learning and yes even I increasing recognize the value of that and being expected to put more thought into things so we go improve in what we're doing but when we do things just for ourselves as shared "For fun" thing is that the right way to go about it?
Rather than leaving a string of comments about technical errors we can easily correct forever marring it, shouldn't we message or email any  points or suggestions that that person can put aright so while they do learn as we need to from our mistakes, our masterpiece isn't left  cluttered up by them?
Second thing is eventually I did get the second Valerie Hastings piece of classic G.O (Girls Only)  fiction in a 1968 hard back edition

 You know all about me and G.O fiction, the stuff I read at school, especially boarding school so I was super pleased about that.
It's really about the strange goings on at Hazelmere, Jill's boarding school where it transpires an arts competition is being used to smuggle out two stolen works of art from a local art collector and the perils for Penny Maxwell of having her Mom on the school's governing body interfering  in the Fourth Forms lessons like the music lessons topics and the Horse Riding plus wanting to fix things for Penny where this will only undermine the sense of fairness seen by the remainder of the form.
I don't think I mentioned for a good while I do have a number of Angela Brazil's masterpieces of the genre in Armada paperbacks, the copies I had living as a child (well we can't truthfully say growing up!)

 I wrote about this several years back , a gripping tale of intrigue, inheritance and the lives of schoolgirls and recently re-read it.
F-f-finally as it's rather cold and snowy up here in the North-west Midlands of England, I am toying with making some slightly older avatars to test out as I do feel I'm maturing just a little more than I did a few years back which is ironic given so  much of it comes from this regressed little/middles life.

I have the right...

Last week I looked at the standards that are appropriate to hybrid middle/adult  me and why this year it's important to build on that progress.

One thing that gets sometimes forgotten about especially on this blog is I do have have rights and needs when it comes to how I wish to express my gender as that person excepting of course that you need to consider where and in what context you do not least for your own protection.

I do have right to express myself if I so wish in a very feminine and somewhat cutesy form even if much of the time I do wear either child-like casual or school-type attire depending on where I am and who I am with.

This is at the far end of 'sugary' with me but it appeals greatly again with some consideration to what sort of context, hitting the younger side of me head on.

This is more the sort of thing you'd associate with me but I really love gingham dresses and they cut of most traditional school type ones does flatter my figure well so I like to wear them when I'm with people who have responsibility for me.
I don't have a major issue with pants, indeed where I'm from it often got very cold and you'd be glad of the coverage but to be honest I generally prefer skirts and dresses with shorts being good for either play or walking as you don't want your flowing dress stuck on the brambles!
Just nobody should define who and what I am except me.

New Year reaffirmation

Seeing this is the start of New Year one might begin this first edition of the New Year looking at resolutions which we have talked about at various sites, certainly at SN, not just the more usual things around positions, material things and pay for those that are employed but more around the things we find difficulty with and in a less overtly religious way, our moral and behavioural traits not just in how they leave us but especially the impact on others of when get it wrong.
The following is the emotional age appropriate standard for me as a child/adult hybrid expressed in a way I can understand easier

Now that isn't too tall an order for me get to grips with so keeping to it is one of my most important things this year.
What I really want you all to do is help hold me to all five points of this over the year be it in a chat room, on the threads of a forum or social media and especially face to face.
I want you to be to be fair but very firm with me being prepared to chastise me as and when I deviant from such basic social norms, learning to own the consequences of my actions to help me be as responsible as I can even with my learning and developmental disabilities.
This is what matters the most for me in Twenty-seventeen.