The Chinese boy who has lived his whole life in a cage - Telegraph
there are still many issues we need to be so outraged about we scream from the highest mountain
A disabled woman challenges the 'status quo' in Ireland. This blog was started to highlight inequality, abuse and injustice in the lives of disabled people. The wooden spoon was given to me when I graduated (PhD) as I'm known to 'stir up' and get things done. I'm still stirring from my wheelchair...Justice for disabled people demands we 'stir-up' complacency, injustice, inequality lack of services, and scapegoating . Disabled people deserve rights not charity! "Nothing about me without me!"
About Me
- Dr Margaret Kennedy
- A campaigner against Clergy sexual Abuse, Disablity Inequality & abuse, Housing Scandal for disabled people, HSE inadequacies
Monday, March 19, 2012
Friday, March 16, 2012
National Surveys of Public Attitudes to Disability in Ireland
National Surveys of Public Attitudes to Disability in Ireland
must try to get a read of this. concentration poor at the moment. if anyone reads please post comments here.
must try to get a read of this. concentration poor at the moment. if anyone reads please post comments here.
Disabled people face unlimited unpaid work or cuts in benefit - the documents | Politics | guardian.co.uk
Disabled people face unlimited unpaid work or cuts in benefit - the documents | Politics | guardian.co.uk
UK becoming a horrible place to live for disabled people. why not just euthanase us all. this makes me soooooo mad!
UK becoming a horrible place to live for disabled people. why not just euthanase us all. this makes me soooooo mad!
Disabled people have come so far – don't undo all the progress
Disabled people have come so far – don't undo all the progress
ireland is way behind too. we disabled people may need to shout louder
ireland is way behind too. we disabled people may need to shout louder
'Ashley treatment' on the rise amid concerns from disability rights groups | Society | guardian.co.uk
'Ashley treatment' on the rise amid concerns from disability rights groups | Society | guardian.co.uk
i am totally against this huge intrusion on a body which is not necessary.
i am totally against this huge intrusion on a body which is not necessary.
Wednesday, March 7, 2012
Laptop denied to disabled student - RTÉ News
Laptop denied to disabled student - RTÉ News
another irish disabled discrimination case. last week a boy with cerebral palsy denied permission to bring a dog to school. the dog has been trained to stop him falling .
pathetic beaurocracy that impinges on disabled children's rights.
disgraceful
another irish disabled discrimination case. last week a boy with cerebral palsy denied permission to bring a dog to school. the dog has been trained to stop him falling .
pathetic beaurocracy that impinges on disabled children's rights.
disgraceful
Saturday, March 3, 2012
Different responses to different dieases!
No competition but questions - yes!
On Monday I have surgery for early stage breast cancer. It is all very scary and I’m dreading the hassle of it all, plus the radiotherapy that will follow. The disruption to my life is foremost in my mind, not whether I will live or die.
The reactions of those around me have been consideration, support and concern. I know people are trying to balance the emotional "Oh my God!" with the "you’ll be OK", the former suggests gloom and doom, the latter a pragmatic positive-ness. Not easy when the word ‘CANCER’ bellows in your mind with connotations and visions of death and the coffin!
At first I could not grasp that I should tell people I had cancer and even asked the breast care nurse "do I tell people I have cancer", and this because I’d been told my cancer was very early stage, so I was hoping the label didn’t really belong. The nurse ever so clearly answered "your diagnosis is breast cancer". Ah! OK, very clear. The hospital nurses are truly skilled and professional and listening to them you feel utterly confident you will prosper post op and not need to make one’s will or buy the coffin…just yet. Even if you did, I suspect their exceptional skill would get you through that one too.
I do NOT feel as if I’m going to die, nor anywhere near it. As a good friend now undergoing radiotherapy puts it "I don’t have cancer, it was removed", which is still doing the rounds in my head. I’ve had lovely cards and emails from friends, and flowers from my dearest friend Noel. The local cancer support group have been amazing. Immediate support. A visit from someone, a support worker allocated, a counsellor, which I’m now availing of. And a taxi service to take me to hospital appointments. I can, if I want to, go to yoga classes, craft mornings, foot massage, and a whole array of things designed to put me into a peaceful state…
So all in all, I can’t really complain at all with this road I’m on at least for now, I feel quite safe.
Contrast this to my previous ‘bad news’ event. Being told I had Parkinson’s half way through my PhD research. I was diagnosed in London, in the famous London neuro hospital. My consultant had the dry demeanour I came to love. The nicest, nicest man who told me my cross cocker spaniel-poodle was not a ‘proper dog’. I asked if he had a dog, "yes", he said "A Jack Russell" - he calls a Jack Russell a ‘proper’ dog, clearly his neuro skill is better than his canine skills!
On par with the cancer care nurses in Ireland this guy can impart devastating news with velvet gloves. But unlike my cancer diagnosis, the Parkinson’s diagnosis completely floored me. I cried, I was shocked, I was utterly depressed. Unable to work, (I was self-employed), which necessitated a lot of travel around the UK, carrying cases and staying every week in a different hotel. I retired at age 54. I am now 59. I completed successfully my PhD…and wibbly-wobbled across the Barbican Theatre Stage, London, to receive it in November 2009.
Now I truly loved my work and immediately plummeted from an annual income of circa 25k to 30k down to benefits only. Not only this I had to sell my home as there were 59 stairs to my front door with no lifts. I returned to Ireland, my home, after 42 years in the UK. (was I completely mad?)
Even in the UK there was little support following the parky diagnosis. Yes there was a group I could join. A fearful thought thinking I’d see people much worse off as Parkinson’s is a progressive disease. I did. But it wasn’t as scary as I thought. What was worse was seeing ‘worst case scenario’ on my second visit to the consultant. A writhing and spasm and jerking I’d never seen before which catapulted me into hysterics. Since then I never go to an outpatient appointment without my friend Anne - a stalwart of sense, well she would be, she’s a barrister!
Parkinson’s is progressive and incurable. Cancer can be progressive but CAN be cured. Parkinson’s affects all aspects of living. For me this means, walking difficulties, falls; I broke an elbow a couple of years ago, only to fall three weeks after and re-break it again! Crushing fatigue where even taking a bath seems an ordeal, bowels that simply don‘t work, bladder which occasionally fails to shut the gates , concentration, and diminished focus on doing required task, planning, motivation, memory and organising ANYTHING is a simple nightmare. This is called ‘executive dysfunction’. It’s not funny. Neither of course is the static bowel or ‘gate not shut’ bladder or "please miss, can I go back to bed" at 11am in the morning!
As I do not drive, I rely on my little mobility scooter ‘molly’ to get out and about. But she is not allowed on the DART or buses because she isn’t actually ‘little’. In rain, hail or snow I’m housebound. The required motorised wheelchair (no longer acceptable to call it an electric wheelchair - wonder why?) which can go on the DART and buses has not been provided because I’m to get a shed built to house it. Only the builder allocated that task declined the job as he, his words exactly "wasn’t interested" , "too messy", when challenged about not ‘being interested’ to provide a brick shed so that a disabled person could get a wheelchair, he put the phone down on me. Nice one!
Here in Ireland, trying to get help to simply get out of my house has been very difficult. I’m told I’m ‘lucky’ (by the Parkinson’s Disease Nurse on the parky helpline) that I have a personal assistant paid for by the HSE and supplied by the Irish wheelchair association (which latter organisation has to raise funds for what the HSE doesn‘t pay, I.e. approx a third of my PA costs - in fact the personal assistant organiser is about to jump out of a plane to provide my service. Certainly beyond the call of duty I would have thought. Parachutes for us all, sponsor cards still available).
I’m LUCKY to get out of my home for three hours a week, apparently many don’t get out at all. And there’s no outcry about this. That’s why I’m ‘lucky’.
I don’t have a Parkinson’s nurse locally to call on, I don’t have a parky group to join, I don’t get free taxi’s to see consultants in Dublin, and I don’t have a parky counsellor. There is an exercise programme in Rathfarnham but as I don’t drive and there is no HSE transport, I cannot get there. So in lieu of that the physio gave me a photographic chart of the exercises I’m supposed to do. But with executive dysfunction these I cannot focus to do. In fact Bank, bills and so forth don’t get tackled either.
So what am I trying to say? Well it’s a question really, why do I as a cancer patient get 100% more support, care and services than I do as a parky person? Which condition is more debilitating and frustrating for me? Answer: The Parkinson’s, by a long shot, at least at this point in time.
Yet the CANCER ‘label’ drives a more pro-active, positive, caring and supportive public than does saying I have Parkinson’s disease. It’s more emotive as people immediately think of ones imminent demise, despite the fact many cancers are curable, and the death sentence not as statistically ominous as it used to be.
I am not saying Cancer patients shouldn’t get this level of support, of course they should…there is no point having a ‘competition’ over which condition is the more serious. What I am saying is, if you truly knew how Parkinson’s affects all aspects of your daily living maybe you would be doing more for people with Parkinson’s, or with other neurological disorders.
After all, once I’ve had my cancer operation, once the radiotherapy is over, in all likelihood that medical issue will be ‘fixed’, not so my Parkinson’s, and it would be good if I could find yoga, reflexology, support group, on going support person, and counselling for THAT!
I am grateful for the neighbours and the local Greystones Cancer support group’s kindness, what stumps me is why was I not offered the same level of support after my parky diagnosis? And why people virtually ignore what it is like to know your brain is slowly going down the swanny, taking your body with it?
Dr Margaret Kennedy
1.3.2012
On Monday I have surgery for early stage breast cancer. It is all very scary and I’m dreading the hassle of it all, plus the radiotherapy that will follow. The disruption to my life is foremost in my mind, not whether I will live or die.
The reactions of those around me have been consideration, support and concern. I know people are trying to balance the emotional "Oh my God!" with the "you’ll be OK", the former suggests gloom and doom, the latter a pragmatic positive-ness. Not easy when the word ‘CANCER’ bellows in your mind with connotations and visions of death and the coffin!
At first I could not grasp that I should tell people I had cancer and even asked the breast care nurse "do I tell people I have cancer", and this because I’d been told my cancer was very early stage, so I was hoping the label didn’t really belong. The nurse ever so clearly answered "your diagnosis is breast cancer". Ah! OK, very clear. The hospital nurses are truly skilled and professional and listening to them you feel utterly confident you will prosper post op and not need to make one’s will or buy the coffin…just yet. Even if you did, I suspect their exceptional skill would get you through that one too.
I do NOT feel as if I’m going to die, nor anywhere near it. As a good friend now undergoing radiotherapy puts it "I don’t have cancer, it was removed", which is still doing the rounds in my head. I’ve had lovely cards and emails from friends, and flowers from my dearest friend Noel. The local cancer support group have been amazing. Immediate support. A visit from someone, a support worker allocated, a counsellor, which I’m now availing of. And a taxi service to take me to hospital appointments. I can, if I want to, go to yoga classes, craft mornings, foot massage, and a whole array of things designed to put me into a peaceful state…
So all in all, I can’t really complain at all with this road I’m on at least for now, I feel quite safe.
Contrast this to my previous ‘bad news’ event. Being told I had Parkinson’s half way through my PhD research. I was diagnosed in London, in the famous London neuro hospital. My consultant had the dry demeanour I came to love. The nicest, nicest man who told me my cross cocker spaniel-poodle was not a ‘proper dog’. I asked if he had a dog, "yes", he said "A Jack Russell" - he calls a Jack Russell a ‘proper’ dog, clearly his neuro skill is better than his canine skills!
On par with the cancer care nurses in Ireland this guy can impart devastating news with velvet gloves. But unlike my cancer diagnosis, the Parkinson’s diagnosis completely floored me. I cried, I was shocked, I was utterly depressed. Unable to work, (I was self-employed), which necessitated a lot of travel around the UK, carrying cases and staying every week in a different hotel. I retired at age 54. I am now 59. I completed successfully my PhD…and wibbly-wobbled across the Barbican Theatre Stage, London, to receive it in November 2009.
Now I truly loved my work and immediately plummeted from an annual income of circa 25k to 30k down to benefits only. Not only this I had to sell my home as there were 59 stairs to my front door with no lifts. I returned to Ireland, my home, after 42 years in the UK. (was I completely mad?)
Even in the UK there was little support following the parky diagnosis. Yes there was a group I could join. A fearful thought thinking I’d see people much worse off as Parkinson’s is a progressive disease. I did. But it wasn’t as scary as I thought. What was worse was seeing ‘worst case scenario’ on my second visit to the consultant. A writhing and spasm and jerking I’d never seen before which catapulted me into hysterics. Since then I never go to an outpatient appointment without my friend Anne - a stalwart of sense, well she would be, she’s a barrister!
Parkinson’s is progressive and incurable. Cancer can be progressive but CAN be cured. Parkinson’s affects all aspects of living. For me this means, walking difficulties, falls; I broke an elbow a couple of years ago, only to fall three weeks after and re-break it again! Crushing fatigue where even taking a bath seems an ordeal, bowels that simply don‘t work, bladder which occasionally fails to shut the gates , concentration, and diminished focus on doing required task, planning, motivation, memory and organising ANYTHING is a simple nightmare. This is called ‘executive dysfunction’. It’s not funny. Neither of course is the static bowel or ‘gate not shut’ bladder or "please miss, can I go back to bed" at 11am in the morning!
As I do not drive, I rely on my little mobility scooter ‘molly’ to get out and about. But she is not allowed on the DART or buses because she isn’t actually ‘little’. In rain, hail or snow I’m housebound. The required motorised wheelchair (no longer acceptable to call it an electric wheelchair - wonder why?) which can go on the DART and buses has not been provided because I’m to get a shed built to house it. Only the builder allocated that task declined the job as he, his words exactly "wasn’t interested" , "too messy", when challenged about not ‘being interested’ to provide a brick shed so that a disabled person could get a wheelchair, he put the phone down on me. Nice one!
Here in Ireland, trying to get help to simply get out of my house has been very difficult. I’m told I’m ‘lucky’ (by the Parkinson’s Disease Nurse on the parky helpline) that I have a personal assistant paid for by the HSE and supplied by the Irish wheelchair association (which latter organisation has to raise funds for what the HSE doesn‘t pay, I.e. approx a third of my PA costs - in fact the personal assistant organiser is about to jump out of a plane to provide my service. Certainly beyond the call of duty I would have thought. Parachutes for us all, sponsor cards still available).
I’m LUCKY to get out of my home for three hours a week, apparently many don’t get out at all. And there’s no outcry about this. That’s why I’m ‘lucky’.
I don’t have a Parkinson’s nurse locally to call on, I don’t have a parky group to join, I don’t get free taxi’s to see consultants in Dublin, and I don’t have a parky counsellor. There is an exercise programme in Rathfarnham but as I don’t drive and there is no HSE transport, I cannot get there. So in lieu of that the physio gave me a photographic chart of the exercises I’m supposed to do. But with executive dysfunction these I cannot focus to do. In fact Bank, bills and so forth don’t get tackled either.
So what am I trying to say? Well it’s a question really, why do I as a cancer patient get 100% more support, care and services than I do as a parky person? Which condition is more debilitating and frustrating for me? Answer: The Parkinson’s, by a long shot, at least at this point in time.
Yet the CANCER ‘label’ drives a more pro-active, positive, caring and supportive public than does saying I have Parkinson’s disease. It’s more emotive as people immediately think of ones imminent demise, despite the fact many cancers are curable, and the death sentence not as statistically ominous as it used to be.
I am not saying Cancer patients shouldn’t get this level of support, of course they should…there is no point having a ‘competition’ over which condition is the more serious. What I am saying is, if you truly knew how Parkinson’s affects all aspects of your daily living maybe you would be doing more for people with Parkinson’s, or with other neurological disorders.
After all, once I’ve had my cancer operation, once the radiotherapy is over, in all likelihood that medical issue will be ‘fixed’, not so my Parkinson’s, and it would be good if I could find yoga, reflexology, support group, on going support person, and counselling for THAT!
I am grateful for the neighbours and the local Greystones Cancer support group’s kindness, what stumps me is why was I not offered the same level of support after my parky diagnosis? And why people virtually ignore what it is like to know your brain is slowly going down the swanny, taking your body with it?
Dr Margaret Kennedy
1.3.2012
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