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.