In this blighted house: I'M Back - being thoughtful again!

Its been some time since I posted. Life has been....difficult, challenging with some uplifting moments. so here's the latest.

Its very hard being disabled and sick in Ireland. Its NOT a 'fair' country. No country is where health care access is based on your income. If you can afford insurance you get treated, if you can't you don't or either you must wait years or months for treatment. Ann & I were recently refused as patients in our only NATIONAL hospital for neurology in Ireland. The specialist hospital refused two older woman age 64 from their expertise. Despite ample evidence that other hospitals have said they cannot treat us. We can only believe this is 'ageism' and 'eugenics/euthanasia' by refusal of health care. What else can it be, for it cannot be justified. On any level.

That has depressed us very much. Its awful knowing you are simply 'not wanted' by health services. It is utterly frightening. terrifying.

this is a picture of us demonstrating outside the Dail about three years ago - at that time fighting for decent powered wheelchairs! (the basics). to think we are still fighting for care is horrendous. Its been years now.

Ann continues to be unwell and had another spell in hospital - very sick, as I did, in fact we were BOTH in different hospitals at the same time. I have been in hospital twice this year and both times had to run the gauntlet of rude, abusive medical personnel. I'm thinking more about this recently. how Irish medicine now is more often 'abusive' towards patients.

This week I heard from a social worker how a woman with MS is refusing, point blank, to return to her male neurologist. Just will not - due to abuse.

3 out of the 4 neurologists in a hospital I know have rude, abusive neurologists. Arrogant, misogynous male consultants who appear to want only two things - Power & Control over patients.

But hey docs - we are much more intelligent , and knowledgeable these days. Patients cannot be 'controlled' as you used to in days past. the transition from Consultant power to Patient power is ugly!

and power is seen in public protest demanding rights and Ann & I do not shirk our duties in that regard. we've been out , outside the Dail again.

Ann asks Minister Finian McGrath, minister for disability - "eh Mr McGrath , Mr McGrath (as he tries to bolt before any difficult questions) can I ask you just one question...can you give us a date on which the UN Convention on rights of people with disabilities will be ratified" well our Ministers are masters of 'the fudge' - "we hope by Christmas" he replied, as he replied last year -2016 - and others before him for 10 years. I kid you not - 10 years! So, of course we disabled people ask "and which Christmas do you mean Mr McGrath?"

We took ourselves to a local hotel for a weekend away when we were at exploding point. Just so much stress. as evidenced by our Hotel room. but we had a lovely time (except for very, very HARD beds).

chaos - a state of mind

Freedom

Top of the world - Killiney Hill

Killiney Bay

Then we had a week in respite care with MS Ireland and we found that too, challenging, interesting and lots of new lessons learned.

But reality is reality....we STILL are in a deep mire of negotiations to get the HSE primary care support we need. God, its exhausting.

Then only last week a huge and tremendous day for disabled people organised by the new group 'By us - with us' it was billed as a memorial day to deceased disabled campaigners and a call for unity, Community and fighting for disability equality in Ireland. a truly fine day was had.

Hubert & Lord Mayor of Dublin ; Michael McDonncha

Mary Duffy

Sarah Fitzgerald

Suzy Byrne

musician

Joanne Chester

Shelly Gaynor

Ann Kennedy with Deputy Lord Mayor reception after day

Margaret Kennedy

So summer 2017 saw protests, holidays, celebration, death and beauty.

The death must be mentioned. A little bundle of fur crossed 'Rainbow Bridge' to doggie heaven. We were both heartbroken. Ann's wee Chihuahua, 'Ana chi' took terribly ill and we lost her. We had to say 'good-bye' to a loyal friend.