The Disabled person of Ireland - The Disabled OLDER person of Ireland

The Disabled person of Ireland

The Disabled Older Person of Ireland

Dr Margaret Kennedy magsken57@gmail.com

Disability activist/campaigner

Are older people disabled or just ‘old’?  This is an important political question.

As an older disabled woman age 66 I find my identity being questioned. When I was below age 65 I was recognized as ‘disabled’, as I’m age 66 I am now, no longer disabled but old. The HSE (Health services) treat me with even less respect. I seem to not be a priority – but actually, I never was.

As someone with a rare neuro-muscular disease rendering me a wheelchair user my HSE supports are now coming from elderly care budgets, ergo I’m ‘old’ and it seems as a disabled person I have no disability rights.

(Mind you I had few disability rights under 65 since disabled people are being hammered right left and centre and this government refuses to do anything about that).

So I guess whether I’m under 65 or over 65 I’m just still ‘snookered’ as a disabled Irish woman.

In March 2018 this government ratified the UN Convention on Rights for Disabled People (UNCRPD) (the last EU country to do so and after many protests by disabled people)    

Yet whilst telling us we now enjoyed disability rights this government refused to sign up to/ratify the ‘optional protocol’ (OP) and deceived us and sold us short of full rights.

Only through that instrument could we complain to the UN if our disability rights were being or had been infringed.

NGO’s can make representation to the UN on our behalf, but since many NGO’s are funded by the HSE – a government agency – few want to ‘rock the boat’ for fear of monetary reprisals. NGO’s are under ‘hock’ to the HSE which consistently infringes human rights of disabled people – and manages to do it with ease and slippery tongues (justifications are classically imaginative). Whilst TD’s and Ministers routinely accept HSE ‘justifications’ for poor or non-existent services.

If NGO’s won’t ‘rock the boat’ for us. TD’s or Ministers ignoring us, we haven’t a hope in hell. I rock the boat – but suffer the consequences. My conscience won’t have it any other way.

The HSE’s own complaints process ‘Your Say-Your Service’ is not independent and if you complain your complaint is investigated by the very HSE managers responsible for your care or is the manager of the professional or department you complain about. How objective is that?  Try it, its wonderful (sic) to experience, a steep learning curve of chicanery.

If you make several complaints you are judged a ‘serial complainant’ or ‘vexatious complainant’ and you might never know you are now thus regarded/designated.

Just as one disabled older woman did not know until a year after being so  described, her sister having discovered on her files (obtained under FOI) this category she’d been adjudged. Thus her valid complaints were deemed - easily - null and void.

Well that was to seriously backfire when an ombudsman examined the case after both sisters put in another complaint!

The HSE had to apologize and address the issues complained about.   But the HSE didn’t like this at all at all…and after 5 years the complainants are still fighting to have the issues addressed. Rather the persons have been subjected to ‘punishment’ so subtle no court of law would dare touch it.

Lets return to the pervasive abuses and infringements of Human Rights of disabled people in Ireland – young and old. How are disabled people of all ages ‘hammered’. Let me give some examples.

Many Autistic and disabled children are receiving shorter school days (if they can get to school at all!), this seems to be ‘permitted’ yet no other non-disabled child has ‘shorter’ school days.

Disabled children and adults needing wheelchairs are waiting anything from 3-12 months for wheelchairs. Meanwhile they languish in beds, hospitals, homes deteriorating in body and emotional/psychological well being and without the human right of ‘freedom of movement’. This is ‘imprisonment’ barely seen as unacceptable let alone any infringement of human rights.

Access to public transport is severely restricted by no accessible buses in the countryside, city buses difficult at the best of times, bus stops not raised to level for easy access, un-staffed DART stations and demands to give 4 hour notice of travel. We have no rights to travel freely at all because of these restrictions. We constantly must plan, plan, plan even to go to GP or shops.  Now we hear Minister Ross announcing ‘disability training centres’ to teach disabled people how to use public transport. Huh? What public transport? Place the onus on us, not the dysfunctional transport system. Nice one Minister Ross. No, I’m not impressed.

There are not enough wheelchair accessible taxi’s leading to stranded wheelchair users waiting, waiting, waiting to go out or go home. Despite the recent transport disability document – nothing much has changed. I still cannot get from A-B easily by taxi. A complaint to the NTA (National Transport Authority) resulted in two well meaning guys visiting me but my taxi provider was not sanctioned for their neglect of my needs.

Disabled people are still largely unemployed, employers just do not give disabled workers a fair ‘crack of the whip’. It’s called discrimination – but it’s difficult to take any legal action. You are just not called for interview. So many disabled people are living in poverty – struggling with a pittance of benefits that do not have any ‘disability needs’ allowances or daily living ‘proofing’ which is far more expensive than one who has no disability or illness.

There is no disability hate crime legislation in Ireland so hatred played out in so many ways can run amok with no sanction. Bullying & public abuse is rife against disabled people in Ireland, but no-one knows. At least the UK has disability hate crime legislation (if nothing else!)  

We disabled people cannot find accessible GP surgeries that have access for wheelchairs, one disabled wheelchair user I know has her GP consultation in a car park. My previous GP had a lift up to her surgery but there were 5 sets of doors between ground floor and surgery (not automatic) I had to negotiate these, alone, with a muscle myopathy. I could not open these doors due to very weak arms. When I publicly wrote about this (but not identifying surgery) I was promptly de-registered by my GP. She dumped me! I had no rights of reply. GP’s can ‘dump’ you (de-register you) without any safeguards for the patients. Nor even right of appeal.

We cannot access dentists of our choice for the same access reasons – I doubt any dentistry can be done in a car park

Recent elections excluded disabled Irish Citizens from voting by councils choosing voting centres which were not wheelchair accessible. Every year disabled people raise these concerns, every year no change. This is 21^st century Ireland for ye.

We can’t even find accessible toilets in public to go shit and pee – how humiliating is that? And if we do the disabled accessible toilets have been used as the store room, with buckets, mops and other paraphernalia lodged therein making using them almost impossible. Such ‘respect’ – we can go in with the mops and buckets.   There are very few ‘changing places’ - rooms, toilets with hoists and benches to allow parents or care givers wash and change disabled people’s incontinence wear. At present disabled people must lie on the often dirty public toilet floor for this assistance. Dignity right out the window.

There was a recent conversation on a disability site about how do you manage the toilet on a long haul flight? Answer, fast, don’t drink, wear ‘nappies’ (even if you don’t normally need to). Do you have to do that? We do.

In 2016 I graduated with a post grad diploma from an Irish University. Turning up for graduation I was ‘parked’ off stage with the equipment/sound/lights technology and buckets and mops. Alone but for the sound and lights technician. Why? Because the auditorium was not wheelchair accessible. I sat in my wheelchair with the buckets. A post grad celebration – not. 2016.

Young disabled people from their 20’s to 50’s are being sent to old person’s nursing homes whether they want to or not – to LIVE. They generally don’t need to be there but with no disabled accessible housing, shortage of home care packages – they must live every day in one room in a nursing home surrounded by those sadly ‘ending their days’ here on earth. Over 1,000 young disabled people live in old people’s homes and no-one blinks an eye. I do. I am outraged. This is both discrimination, oppression and abuse. I call it such. Yes, I do.

Older disabled persons can no longer (generally) access disability centres for respite care (though to be fair I’m still allowed attend the MS Ireland respite care centre in Bushy Park Dublin, but they are poorly funded by government and struggle to take all who need respite - more anon). The respite care grant was abolished where the HSE gave grants so you could find a respite placement yourself. It was cheaper this way but abolished. Respite for older disabled persons has to be in an old person’s ‘end of life’ nursing homes. I know – I’ve just ‘legged’ it out of one such establishment (in wheelchair with my twin, also in wheelchair). It was supposed to be a 14 day respite, we lasted 5 days. I suppose I’m lucky – I did not have to stay there permanently but I was still subjected to the depressing nature of such places. No, I don’t count colouring pictures as ‘art’. Nor anything near fulfilling, enjoyable, or creative. I did that as a 4 year old…I’m no longer age 4. I don’t count a harpist dressed in casual track-suit-like outfit, plucking and singing ‘do, a deer, a female dear…’ from the Sound of Music as a beautiful classical harpist repertoire or agreeable ‘entertainment’. I found it disrespectful. To the harp and to the audience. If you cannot give a wonderful little concert to the old dears, if you cannot put a decent dress on, don’t bother coming.

I was told where to sit for lunch, told I needed to ask permission to make a cup of tea, told I could not have my bedroom door to balcony opened for health and safety reasons even if it was as hot as Hades. It didn’t cross their mind that if I wanted to ‘fly’ off the balcony I only had to go to the ‘library’ where an open balcony was available. The health and safety logic defeated me. Then when I decided to go into the garden a receptionist ran after me to ask if my unit knew I was leaving the building. Seems I needed ‘permission’ for that too. All very controlled, institutional, humiliating. At least this nursing home didn’t explain to me what a t-bag was as the previous one had. Or try to put me to bed at 7pm or quiz me on what day of the week it was.

This is all in stark contrast to the MS Ireland Respite Care Centre in Bushy Park, Dublin, where I attend as a disabled woman (two weeks a year – but the ‘week’ is 5 days) and enjoy thoroughly. I am not regarded there as ‘past my ‘sell-by-date’ or even old – even though I suppose I am. I am greeted as a real person, big hello’s and cheer. They allow you autonomy and are respectful. But as I said the government does not fund….sure we are all decrepit old bats – waste of resources so it is. So MS Ireland can’t do nearly all it wants to do. But what they do do is fine, really fine.

Recent announcements that the government plans to cut home help hours and home care packages will increase our vulnerability and hardship. We will be greatly ‘hammered’. ‘Tough’ the government seems to say to us. Older people will especially be neglected by this, become bed-bound, soil, succumb to bed sores, not eat properly, pick up infections and die sooner than needed – but that seems the plan. Passive euthanasia.

Asking the HSE for your files under the Data protection act /Freedom of information you will discover things hidden from you, but you will also find huge tracts redacted , which you are not ‘allowed’ to see. You know they are hiding something. There is a constructive effort to withhold information from you.

So am I old or disabled? Where is my wee pigeon hole?

I am old – yes – I am disabled – yes, but ultimately I am a citizen of Ireland with allegedly full human rights as a citizen.

But you would not know this here in Ireland, where you can’t get public health care, where community supports are at a rock bottom shambolic state , verging on neglect and abuse, I’d say it was more than ‘verging’ myself, where the HSE make life a veritable hell-hole of misery on a daily basis. You must beg, grovel, plead, as to your difficulties and illness, but rather than hear and believe what the clients are saying, professionals assess ‘down’ to save the HSE money.

Consultants, who used to be allies, writing letters of concern have now become so drained and with a sense of hopelessness, they don’t do this anymore. Quite the opposite, they’ve aligned with the ‘system’. Being so ‘defeated’ they ‘round’ on patients and blame us who appear to ask for more. How dare we?

At my last neuro-muscular visit to my consultant, she said I must…’realize the deficits in HSE resource’s’. Why must I accept misery and suffering at the hands of the HSE? I have real needs not being met, which should be met. I’m NOT accepting neglect of care. Never!

Professionals ‘Assessing down’ to safeguard resources is very common. They know they are doing this but front line workers won’t ‘rock the boat’. No-one will in the HSE – their jobs would be on the line. Why do we need ‘protected disclosure’ legislation – to protect the whistle-blowers?

Right now, I am, my twin too, exhausted.

I didn’t, never expected that just because I developed a rare neuro-muscular disease I’d have to run the gauntlet of not even second class citizenship, but hardly a citizen at all in Ireland. It shocks and appalls me. Nor am I alone.

All disabled people in Ireland have a story, from childhood to grave – disabled people suffer – not necessarily from our illness or disability, rather from being judged ‘not worthy’ of citizenship as a disabled person.

Once ‘disabled’, whether young or old, you’ve been marked. As ‘other’, as a drain on resources, as ‘those ‘useless eaters’. This is never openly said, no=one would dare, but we disabled people know the thinking. Poor resources equal ‘you are not a worthy citizen to support’. We are expensive. Hitler killed us. Remember Hadamar? No, no-one knows of Hadamar…but we do. We know.

Ireland does not outright kill us, but sure as eggs is eggs Ireland makes it almost impossible to live as disabled citizens on an equal footing to non-disabled citizens.

We are ‘killed’ in mind, body, emotions and psychologically on a daily basis. If we say this we are perceived as ‘bitter, chip-on-shoulder’ disabled person, No-one-one rocks the boat and says it as it is. Abuse and neglect is politically sanctioned and we have no way to challenge it.

We disabled people say it as it is. But no-one hears. We simply have no power. traction, ‘voice’ – we must ‘put up and shut-up’!  

I am proud that I do not do that!