restaurants and gluten free bread

Value for money: Gluten-free bread


why should our cafe, restaurants, bistros and all food outlets be ALLOWED to dscriminate against the 'gluten free brigade'.

the high level of the population needing gluten-free diets is rising. people with neurological disorders seem to benefit from a gluten-free diet, not just coeliacs. if your health and life is compromised by non-gluten-free food outlets then you are being put in danger by these places.

there are human rights laws - some i seem to remember give a right to life, quality of life, to choose, to associate etc. if you have to stay at home then you are in fact imprisoned.

that cannot be right!

gluten-free people demand all food outlets to not exclude them.

Suzy Byrne: We’re not talking bad backitis here ... we’re talking about people with real disabilities - Analysis, Opinion - Independent.ie

Suzy Byrne: We’re not talking bad backitis here ... we’re talking about people with real disabilities - Analysis, Opinion - Independent.ie

how to get a Home Help service

a) tell the doc to say in his letter you need to be dressed (you don't)
b) tell the doc to say in his letter you can't put your shoes on (you can)
c) tell the doc to say in his letter you need someone to cook your breakfast (you don't)

This is called 'creative assessments' , just like 'creative accounting' , you'll need that to keep all your benefits too.

In other words disabled and sick people are forced to be liars, manipulative and devious. Just to stay alive.

Then of course if you're found out you are a fraudster, bogus, scrounger...not a disabled/ill/old person not coping on meagre benefits and no support services.

So the system is not really a social CARE system, it's a social EVIL system. Evil to arrange it that disabled/ill/old person should have to grovel, lie, scrounge, feel guilt, humiliation, afraid, and suicidal because they NEED  to get all they can just to feel 'life is worth living'.

Evil that we have to constantly be forced to be under the scrutiny of this so-called 'social care' system.

why not put us all in gaol, as frauds, scroungers, liars.

Pots and Pans

This is a new one on me!  home helps feel 'abused' if they have to wash the pots and pans...yep. The Home help organiser said to me yesterday "some people abuse the Home Help service...they leave all the pots and pans for the home help to clean".

the Home help service was once a really good service. When they employed CLEANERS. They would clean, yes clean when you could not. Now however they have become 'tidy-uppers' because under health and safety rules they cannot lift anything e.g. a chair, push a sofa, or clean behind a cupboard.

hence what you really get is a dust.

now they want Home Helps to be 'carers' , not cleaners because you know CLEANING, real CLEANING is so humiliating a job. So in Ireland the services are going to be only for those needing help to get dressed, bathed, and a meal cooked.

You can live in squalor but they'll get you out of bed sort of thing.

So who is going to do the cleaning (not that much of that gets done...'dust') well I guess the little old woman or man will do their best, reach for a broken cup off the floor, fall over, break their hip, smash their head and die of pneumonia in hospital. Therafter pronounced on death cert cause of death 'pneumonia', not 'withdrawal of home help service'.

So will you live longer if you need to be bathed, and dressed and put in your wheelchair. yep, probably, only snag ...you'll live in squalor to the bitter end.

Nice thought.

'feelings'

I may be a bitchy bitchy disabled woman ....at times...but I do hold very dear my FEELINGS.  In other words they are my OWN.  No one can tell me how to FEEL.  They may tell me how to 'behave', i.e.  lower my tone, shut up, and they might be right to do so...but what is in my heart, is in my heart. ...

Now why would I be going on like this?  ADVICE.  Sometimes other people's advice about how one should FEEL is really only someone trying to order you about, have power over you, or deny you.

So that is why I got so annoyed about being told I was 'lucky' to have a PA for 3 hours per week, because that person wanted me to FEEL grateful.  So she was advising on how I should FEEL.  No one should do that to anyone.

On my facebook page someone has posted some words of stephen hawkings who is giving HIS advice on feeling.  This time it's about 'regret'. don't 'regret' what your disability won't let you do, rejoice in what you can do...' Yeh well Stephen, either I've not 'progressed' in my 'disability' identity i.e accepted it, or I'm a complete failure.

I DO regret, I do regret, I do regret. Those feelings are mine and no-one can tell me NOT to regret.

I have a neurological PROGRESSIVE condition. I ain't going to get better.  I rejoice I can see, I can ride my scooter, I can watch TV...but I regret very much the loss of my job, the loss of my income, the loss of my home in London (sold 'cos of the 56 steps up to it - no lift) .

I may lose alot over the next months, years but one thing I ain't going to lose....thats my right to feel feelings. I will FEEL whatever I feel.  Rage, anger, regret, sadness, happiness, love.  I will however endeavour to cull all bad 'behaviour' that might ensue, e.g I won't hit anyone, scream at anyone (as best I can) or speak ill of anyone.

I will challange anyone, anything, law, process, beaurocracy, that creates those feelings I should not have to carry. Gratitude being one!  resignation another, capitualation, submission, lucky,

Get my drift?

Do-gooders give advice on feelings...
Real people, good professionals, hear them, listen, and write it down in their notes as genuine.

if I feel angry, I AM angry,
if I regret , I regret
If I don't feel 'lucky' , I don't feel lucky
etc. 

So Stephen and the Parkinson's nurse. Walk a mile in my mocassins before opening your mouth. Or should I say 'wheel a mile in my wheelchair...?' (Oh Stephen probably has....but he's not ME, so HIS feelings about regret, are his, don't foist them on me)

My 3 hour 'out and about help'

You might well wonder how a young girl, young enough to be my daughter , employed by the Parkinson's Disease Association , had the GALL to tell me I was 'lucky' to have 8 hours of help per week. 5 Home Help hours and 3 Personal assistant hours. The former 'helper' cannot take me out for 'insurance' reasons, the latter can.

The problem is political in my view. a) has she any clue about human rights, b) disability equality c) disability rights.

No, her perspective is merely based on what disabled people DON'T get. Her baseline is low, not about equality. It goes like this...you have 8 hours help, many have none, ergo you are 'lucky'.

It didn't go.." 3 hours out of your house is outrageous, and yes, I know disabled people with no help to get out of their houses and it's a downright disgrace, infringing every disabled persons right to equality of opportunity, freedom of movement, and dignity and respect".

So how has Ireland and Irish professionals come to have this lower than low baseline of what is decent and humane?  Is it a 'culture' that says Disabled people have always to be grateful? (yes), is it defeatism that professionals feel no more can be achieved? (yes), is it discrimination not challanged because thats too difficult? (yes). Is is low standards in a country where low standars are merely judeged to be standard!? (yes) and so much more...

I am outraged enough to start this blog, waving my wooden spoon to stir the complacent, politically lazy, defeatist professionals who are supposed to be acting on my behalf.

she said I had 'misunderstood her', no I did not. She was unwilling to be outraged on my behalf, on the behalf of those who live with Parkinson's. She wanted me to be 'grateful' for the scraps from the table.

So from my new wheels, this raging Dr will rage that disability means what it's always meant ...'dis-abled by professionals, agencies, government departments, attitudes, prejudice, families, community...' etc, etc.

I am NOT disabled by Parkinson's, it restricts me true, and walking is now almost impossible, but I am 'able', totally 'able', the 'dis' is added by all these people and attitudes..and I'll be damned if I will accept the 'dis' gladly or submissively.

Down with the 'Dis' I say...down with the 'dis-ers' .

We don't need helpers or professionals who keep the 'dis' and throw out the 'able' in patronising sub-standard service provision.