Dr Margaret Kennedy
The year 2018 is nearly over , 2019 just around the corner.
We ponder the good and the bad at this time - well I do. And I've considered more than ever my perilous state of health. Simply because with a neuro-muscular degenerative disease you are daily reminded of 'disintegration'. The downhill slope.
Being disabled is tricky enough in a world of discrimination and abuse towards us. But being disabled and becoming more so daily brings a certain underlying dread of demise and inability - dependency and death.
For now, not only are we disabled we are 'taken-over'. Others decide what we feel, what we can/cannot do, what we must do, and generally 'take-over'.
I fight for my IPC
It's as if my autonomy has the disease. My power & control 'infected' , 'damaged' , 'lost' by my disease. and 'take-over' is automatic, sensible, necessary to divest me of my independence, power, control, decision making. For most around me this belief is almost universal. I'm not the only one divested of IPC (Independence, Power, Control). All disabled people, all older people, all vulnerable people by virtue of their 'state' are denied IPC.
Twins with same disease
Both resisting 'Take-Over'
Lets look closer at IPC 'Take-Over'.
Doctor's/Consultants: a conversation.
Dr: How are you?
MK: I'm much worse
Dr: let me examine you
MK (gets onto plinth)
Dr: (says nothing)
MK: describes difficulties
Dr: takes notes, says nothing.
end of consultation. This 'Take-Over' is subtle. A complete ignoring of my reality. I'm still breathing, still, walking - a bit - so all is well. My sense of 'owning' my disease, facing reality is shaken by the utter disregard of this Consultant. I'm stressing my downhill slope, I'm holding on to IPC needing his support to do so but he's just using 10 minutes allocated to chart my present situation. we do not meet on any level. I wheel out of his room feeling my IPC has slipped down a further notch as I could not make my reality heard. He's not the slightest interested in my IPC but rather my brain neurons. and even that is debatable.
I've since left this consultant after 6 years of horrendous neurological 'care' - the new neurologist is not much better and I now realise 'care' is not on offer in Ireland. You are but a body and have no IPC to change THAT reality. Your humanity; IPC is totally disregarded. It's not a medical issue.
Degeneration is all I'm 'allowed'.
Not allowed in ?
Another Consultation: Nurse assessment of Needs
Nurse: can you wash yourself?
MK: yes & no , describe what I can, cannot do
Nurse: Can you dress yourself?
MK: yes & no - describe the bits I can do, cannot do
Nurse: can you cook?
MK: depends on what meal I'm trying to prepare
She grades scores of what I can/cannot do. however she DECIDES. She decides my competency. my needs, my abilities. all based on my body. there are no social, emotional, psychological or IPC questions. They don't count in the scheme of my 'needs'.
When I read her report I understand I've been graded 'down' so as to deny funding for greater services. it's deliberate. It's an exercise in her Power & Control, not mine. For I've really no say in the scoring. and it's the scoring where she holds PC and uses it. If I say I cannot put on my wheelchair mac in the rain outdoors and demonstrate, it is not scored for her scoring only relates to in house ability. She's not interested in my IPC or how to improve it. all she's interested in is that I'm clean, dressed, eating. I'm only a body to be kept alive. no more than that.
The HSE - Health Service executive.
This is the community service designed to support people like me in Ireland. You tell them your hair colour is brown and they'll say it's not - it's blond! Daily games of IPC. There's no such thing as 'working together'. it just does not exist. They tell you the level of IPC you are allowed.
They deliberately do not SEE my muscle myopathy, the weakness, the fatigue therefore it does not exist. I cannot tell them - I've tried. Their understanding of me is purely based on economics. budgets, saving the coffers. So I must NOT be judged as a person with a degenerative disease at all. Good God, that is NOT policy at all.
IPC is not a plank of HSE 'care'. They don't want it to be. it cannot be, because they have to control budgets and giving me IPC would be too costly. So every effort is made to not hear me, deny my disease, downplay my needs. Deny services or access to services. That's policy.
Yes A farce
Family
Being the youngest of a gaggle of older siblings is tough shit! I'm 66, next up is 73, then , 76, then 77. Now I'm not expecting care from older siblings. They are all ill in some way. mostly heart disease. No, they cannot be my 'carer's'. but they do decide my IPC. Oh yes, they do. They decide I should be in a nursing home, or supported living, or residential care. My wish for IPC is seen as stupid, not sensible. if I complain I need more support the stock response is "you need to be in a nursing home".
not only do they decide how my IPC needs to be 'taken-over' by someone else, they decide how I do things. "don't bring your wheelchair or PA (personal assistant) to the party" was a recent IPC 'take-over'.
there was such a furore over my choice to do this I was harangued by all siblings and so capitulated. I was told to 'apologise' to the sibling I had argued with. (over my dead body). I was even told that sibling had NOT said this. I have it by text on my phone. evidence of that particular IPC take-over.
So as I leave 2018 I've learned what I will fight for in 2019. my own IPC.
This is my sole fight. IPC. No-one will tell me what level my disability is at. no-one will tell me where I will live. no-one will tell me how I live.
I will define who I am now.
I will hold on to MY IPC.
no non-disabled person, in whatever capacity, will decide the quality of my life.
I will not be 'reduced',
forced to acquiesce to ableist agendas.
I'm sick of the 'Take-Over', Tired of 'Take-Over'. raging at ableism, discrimination, annihilation, denial of my IPC.
So roll on 2019...IPC is my Goal. I will win.
Are they really listening?
PA demonstration
