Thoughts on reaction to Steven Hawking's death

As I'm laying resting my damp bones here it has been snowing hard so I thought I'd write a few thoughts up around disability in the light of Professor Steven Hawking's death not least reaction to that as much had been written not just around his intellectual and professional achievements being inspirational but also of his Motor Nurone disabling him.

 (Source: ITW)
One reason actually I've chosen this picture with Steven on the far left was it was taken in 1977 and like him I also used a BEC electric wheelchair which were made in the Black Country around the same era, showing him with his then wife and children, being a family.
Steven's condition left him with what I'd call an 'output problem', one in a differing context I share  where while he knew - and was very gifted intellectually - what he wanted to communicate, putting that over especially into words was hard going and required assistive technology.
In one sense I feel Steve's achievements showed physical disability by itself isn't a barrier to learning in an era when many physically disabled children received a sub-standard education taking no public examinations because of the attitude of "You won't be able to get on in life" and Steven himself received a Grammar School education prior to developing MND.
The otherside of some public reaction to seeing that is to argue every disabled person is capable of learning to the same degree which I'd say isn't true even if there is a lot of mileage in saying different ways of teaching do aid learning  and the traditional one whole learning style approach doesn't work making learning harder for those of us with learning difficulties.
The other area is that his achievements were aided by the support he received in studying and personal care tailored around his needs and the times he required that whereas many disabled people in education often receive little and those outside feel they spend more of their time on battling to get appropriate personal needs paid for and met. It's not unknown for disabled people to put to bed as early as 8PM because it suits the care system who provide home helps where you may wish to be out for longer.
Influence at least in this society does make a difference and the sort of family and social class does count for something not that I'm personally against using any connections to advance you or your families needs being recognized and he was in a better position than many in that respect.
That support can make or break your attempt to break out of the cycle of low achievement helping the individual  to make the most of their abilities including their academic and vocational ones  many disabled people through no fault of their own find themselves.
So to conclude like many I was inspired by Steven's achievements and ability beyond his very real disabilities, one should not forget not everyone is the same and not all have the support system advantages he was able to get (and rightly) that greatly aided it.

Weekly reflection

 

This week as the weather has been  better for getting about so I've managed to get out and actually walk a bit further than normal getting close to what I was capable of several years back so that's been great this week.

It's so great to start to wake up to the dawn chorus now that it's getting a bit bit bright and for longer because it sounds so peaceful and when I'm out walking often I stop and listen out for them spotting them in the trees or just overhead near the fields.

Also the people who look after our Inland Waterway have been at work so I've been over there on my travels talking with them and other people about too.

It's strange but all of this actually leads to me feeling less stressed and from that much less likely to lash out at people when it just all becomes too much emotionally and when it comes to stimulation too which is a great help not just to me but Mom too.

As I'm typing this out today it's her day - what the natives here call "Mothering Sunday" - so I got her a card and present while I was in town late last week while I was out exchanging a gift voucher toward a present for my birthday.

I've also been thinking about my over 18 Tumblr and were I want to take it  so spent sometime while out thinking that through and am working on ensuring it is targeted in and around exactly what I want.

I think I'm doing good now. 

Just as this blog is about to go to press, it's been announced Professor Steven Hawking has died who like me is a quadraplegic.

He's been battling Motor Neurone disease since being diagnosed with it at university   being a electric wheelchair user but although he required considerable personal support, he went on to complete a lot of research into the Cosmos to acclaim from his peers and can be credited with helping to popularize science and break down the idea that disabled people cannot contribute to society.

He was an inspiration to me and countless others of our generation.

Coping with the weather part II and stuff

We begin this weeks entry where we left off last week with the challenges of the extreme weather we had and how that effects me.

 The weather took a turn for the worst on Thursday when an awful lot more snow came down and indeed the overnight temperatures went below minus 11 degrees C which is is 'brass monkey weather' was my mate pictured here could tell you.
The snowfall was such that I couldn't get out on foot with ice trapped underneath and many of our roads were subject to restrictions too compounded by issues on the neighbouring motorway network.
I didn't get out until the Saturday but then have had to rest my left leg since for a couple of days as in an attempt to deliver some items in in very icy conditions I strained leg muscles and badly hurt my lower leg bones making it very painful to put any weight on it.
Yesterday was a ahem special day which given the challenges I faced and was able to master seems more deserved than ever although with the weather somethings like cards were a day or two delayed arriving just in the nick of time. 
I've also been working on the 'other' Tumblr removing those who just want to live through the idea of a spanked me rather than people who are more interested around age regression, past childhoods and cute stuff even if from time to time I may get spanked.
By co-incidence my BFF was doing something similar with hers with both of us remarking when it comes to blogging and reblogging images of it it gets really quite tedious so she's posting just the things she likes posting as like me she's more than just a spanked girl.
The thing is there's been less than 2% of posts even relating to spanking on that Tumblr of mine and that for me there's nothing sexual or kink in it but their own accounts very much are and I'd rather people followed because they were interested in me as a person and are prepared to support spanking me where it's necessary to train me to do better.

 That's the thing, we're appreciative of what people are doing to help turn us around as adult but child people with the needs and issues we have using such means because it's make a difference for the good for us but we're not your entertainment.

Coping with the winter

By the time I get around to posting this we *may* have snow thanks to a pressure system from Siberia, Russia according to forecasters so part of this week was taken up with taking precautions because I do take some tablets that I find help in managing my conditions so I needed to go into town to get them.
Although it is a bit controversial I do find Omega 3 typically found in fish oils helps in a couple of important ways with me the first being I find it helps my brain to be mentally sharper and less of a fuzzy haze than it is when I don't take them and the other being they do help control the side effects of my badly damaged tendons keeping inflammation lower without the issues I had with non-steroids anti inflammatories  like Voltarol which caused damage to my stomach lining.
So It kinda matters to get them in while I can.
As well, I am making progress in walking having managed Sunday morning to walk a good eighth of a mile more than could a few months back which is quite an improvement on how I have been a for good number of years and that despite a full cooked breakfast.
Weekend meals I think probably are bigger in terms of calories compared with those during the week so I may at some point need to look at how to size them down a fraction as I'm convinced  I honestly don't need the cooked breakfast and full evening meal on Sundays.
I stood still and  saw a Blue Tit land on  a branch very close to me which was really nice to see while out in brilliant orange glow of the Winter Sun even if it was just 1 degree C and so I was very well wrapped up with gloves and scarf on.

 Tuesday brought snow to this part of the Midlands so wrapped up well I did walk a bit cos a part of what I'm trying to do is to unlearn some of the 'bad' lessons from the past one of which is because I did hurt myself during the Winter snow season of allowing a fear of what happened to paralyze me from going out and to allow it to justify inactivity even I need to be active because it makes me feel alive and healthy.
Being outside really helps me.

Reflections from littles camp Winter 2018

In some respects this is a follow up to littles camp report  that I blogged on the main blog on Monday as while that covered more of the activities and events of littles camp this entry is really more around my personal, emotional reflections on that period.
A good a start as any is to look at my emotions which as you all know have been all over the place with the permanent loss of one relative and sadly the living loss of uncle who is sleeping further and further into the Alzheimer's fog, struggling to recognize a soul.
In some ways at least it takes me back to how I was when I was Thirteen around the time my Grandpa died when I was sent around to keep an eye on him although in truth I felt way way out of my depth struggling even then look after myself never mind being expected to make (relatively) mature decisions when neither of us could understand each other but everybody else was going through the charade pretending this was okay.
I know, we all know, losing a close relative is a loss, and you do grieve for them but this memory is associated with feeling helpless, inadequate even and it's that which has been on my mind.
For me, being away was necessary because I needed to have mental and emotional space to process these thoughts and to do things that made me feel happy and whole again so just being focused more on play being away from the environment where all this hangs around cloud style was a must.
It also helped that those who I entrusted about what was happening were supportive, showing love and concern without smothering me so while being supported I could breathe while sharing and taking turns helped reconnect me as I am very prone to just shutting down when feeling overwhelmed emotionally.
One thing unexpected that happened was because Camp this time was more laid back with less structured activity a few of us did feel not withstanding it was Winter to venture out of doors so we actually went on longish nature trails.
I found just being away from things, switching off to all other than the natural sounds,sights and smells helped  as we walked talked about various things although it was the case I did lose my footing and had to pulled up as my foot landed in mud and started to go sliding requiring my camera and shoes to cleaned !
We also encountered dogwalkers who actually were not phazed by seeing me in a dress and three-quarter socks along their travels and indeed one complemented me on my looks as friends with permission stroked the dogs!
While thinking a bit about where you might go makes sense avoiding extreme presentations, sometimes we set the bar in terms of what can be accepted higher than many are prepared to accept us as ourselves.
While out I also did some photography which usually helps relax me.
One thing I did talk about with member of the group who also has brain damage was how we do things, the things we do appear on the surface to cope with that leads others to think we don't have the needs we actually do.
This is something I do find a problem not least in trying to shop where staff are trying to upsell to you and make offers that I'm in no position to deal with leaving me in suspended animation and others seeing me struggle asking if you're okay because I haven't just frozen but have gone mute. I'd sooner have an official card I can show so I can treated more like a minor at the counter as my capacity in these situations is very much sub adult and in that respect I need 'protection'.
When I'm away I'm always 'looked after' in their words "I always treat you more like a child" and apart from the odd verbal reminder I did behave myself and helped out making what I was to eat and doing chores such as setting the table or loading the car ready to go.
They are quite firm with me around that whole area of having to assume some responsibility and play an active if of necessity limited role which was a bit of culture shock at first but is helping me do a bit more and find some self discipline.
I found the time away did help me think past those issues that were on my mind, finding more joy in more fun child-like things which is in so many ways where I remain ever the adult but child while the walking helped with developing and maintaining better fitness not just physically but also mentally too.

Preparing and stuff

It's a busy time for me with just over a week before I'm away for short while so there's sorting and freshening up things to go as not only is there just so much room in my case plus any 'hand luggage' there is the fact it's damaged pawed wobberly me that's carrying it until I get a friends so I can't take tons of stuff with me either 'just in case' or for a change every few hours for several days with all the co-ordinating that takes.

That means I restrict it to a few things I'm comfortable with that co-ordinate with  common 'base layers' which sounds rather close to uniform which you could say it is.

 Great Britain is a country where very many schools, State and Independent have uniforms that pretty much have to be adhered to the style of which has change for a good number over the years although the current trend is toward more traditional forms such as the pinafore perhaps a backlash from the late 1990's, early 2000's fascination with more casual almost track suitish  'sporty' attire that also influenced Girl Guilding uniforms.

Believe me I'm much happier with that kind of approach as it makes managing and picking out what to wear much much easier.

Another kind of preparing of a less pleasant kind is getting my head together for Thursday when the funeral service for my Aunt will be held as currently there's a three week waiting list for them at least in my district and at least the service is within walking distance.

A family affair

During this week when I'm preparing for going away in a few days time, there are a couple of things on my mind.
One is my Uncle who hasn't been well for a period with Alzheimer's but by December had got the point his partner felt they had little choice other than to place him on a trail basis in a care home simply because he needed round the clock supervision as he's forget if he'd taken tablets, time of day and tellingly couldn't put names to faces.
Indeed on at least a couple of occasions to my knowledge he'd gone missing, going toward a past 'home' with no realization it was no long the one he was at.
My relationship with him as with most males in my family was one of not feeling comfortable around which was no reflection on him personally but due to ahem 'other' experiences in childhood  so until my mid teens I'd pretty much hide from him whenever we were around.
Things are concerning at the moment for him being in Hospital with a major infection which is proving hard to treat and indeed they are unable to get a camera into him to look in his system.
Moreover he just seems to be lying in bed, not saying anything from tiredness not itself being aided by not eating any food for days.
It isn't shall we say looking good at all. 
Thursday February 1st was the day in which my Aunts funeral service was held locally and what she meant to me was written on the other blog. I have been walking and looking at her house not that it was comfortable but simply because I know  I'll never be heading to or entering into it as I remembered it and so I need to say a kind of farewell to that part of my life.
My Aunt's eulogy  read out by the Minister of the chapel she grew up in as a girl was really well put together showing how her Methodist upbringing had shaped how she lived her life, a life it has to be said made difficult by severe Asthma and the care and concern she had for others.
To be with her as I was  often in difficult situations in my messy family situations even past eighteen armed with a teddy and children's books feeling misunderstood  and in need of affection one felt this.
Her home, shared at the time with her parents was in so many was a second home, a refuge where my what now would seen as littles age regressed side was a place where they accepted developmentally disabled me as that caring and dealing with that adult but child was vital and from which older members of the community learned to understand and accept me as I am. They bought me simple child-like gifts such as annuals and selection boxes  finding by valuing me what I had to offer them because love is reflected by love. Always.
Among effects I was gifted a grey and white stuffie which is pretty apt given how I am rather than anything really groan up and that it was the first place I could just be this adult-child being accepted by her and her parents without judgment.