Sunday, 7 August 2016

QOL, rights, and Inclusion...

Quality of Life, posits four domains in assessing quality of life: ecology, economics, politics and culture. In the domain of culture, for example, it includes the following sub-domains of quality of life:

Identity and engagement
Creativity and recreation
Memory and projection
Belief and ideas
Gender and generations
Enquiry and learning
Wellbeing and health

Also frequently related are concepts such as freedom, human rights, and happiness. However, since happiness is subjective and difficult to measure, other measures are generally given priority. 

Society and the state define our Quality of life via welfare definitions, and in the UK THEY are redefining what your QOL should be, not you.  E.G. in deciding if deafness really is the problem, or, you're attitude to it !

I can see  where I went wrong, i.e. in planning extensively to avoid stressful situations and events deafness caused me. I thought this was a natural reaction to being disabled, and the realisation support wasn't there, so if I don't help myself then who else will ?

However in so doing, (and someone else looking at the way I did that planning), it was pointed out that I was organising my own isolation, so it wasn't 'society' or even access limitations to blame.    In effect as I had been avoiding situations rather than facing them down, it was my own fault.  I still try to help myself, and that means I won't get either the support, or the welfare allowance.  My quality of life went down by default, so I could manage my life.  

The DWP (The UK state welfare dept), said there is no question on the form that covers 'quality of life', like comparing apples with elephants, and there is no 'norm'.  Had we hearing could we still compare ?  I couldn't state properly how it had deteriorated, and the classic avoidance/adapting approaches to limit stress, most of us are advised to adopt, were noted as 'He doesn't need help, he can help himself.. and has developed strategies to do it...'  

Our own charities supply these 'strategies'. They are not considering if they work, in respect to your aspiration. Using technology was also a reason to oppose the fact your QOL had gone down, now, you have more and equal access it is mooted. It's like stating you have a phobia of Doctors, and the simple answer is to just avoid getting ill. Given HoH and deafened do not have a national support network, I don't see what choice I have other than carry on DIY'ing, and raising hell about access as I go....  It doesn't help, the diversity that is deafness and loss, is at conflict with each other over what quality of life  should be based ON.

One area. bases it on access and support to own culture, the other on how that access and support empowers them with re-integration to the mainstream.  In reality neither, gets what they want, because integration and inclusion are viewed differently.  If you have always been deaf, then your biggest issue might be alleviation and adjusting to what it brings you.

If you had hearing and are losing or lost it, then no amount of alleviation is really going to cut it, you want to hear, full stop. This leaves welfare and support systems at complete odds as to how to please most, so they dump it on charities to sort out, this effectively sidelines and labels you. It is God's gift to state areas determined to prevent you claiming cash as a support. The confusion can be readily exploited.

300,000 with hearing loss, found their 'disability living allowance' stopped virtually overnight.  Deaf reliant on BSL support to manage a job,  found their cash allowances to pay for support in work capped to the extent they lost jobs and BSL support, because capped  costs didn't cover the fees..

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