Watch Michael’s story from Galway.
My name is Stacey. I am a University student in DCU, studying to be a nurse. Unfortunately I suffer with chronic migraines . Beside the obvious severe pain that I go through on a regular basis, it has being the ignorance and unacceptance attitude to my life changing condition that bothers me also. People often compalin about headaches and I have had people say to me in the past, ” ah it’s only a headache, I get them.” But the last number of months has seen the severity of my headaches worsen to the point where it is effecting my professional and student life.
Often waking up with headaches in the morning that can also last for weeks at a time, I have missed shifts with my part-time work and my studies have suffered in the past also. The pain from my migrainse often makes it feel like my head is about to explode from the constant built up of pressure, and as a result I also get blurred vision which can be very dangerous.
The Migraine Association of Ireland has offered some support, after I recently signed up with them, as was the case with some of the nurse care I received in Beaumont Hospital through the work of accupunture and injections. I did however have to do a lot of research into migraines and support myself, as I don’t feel it is published enough as a disability.
I have a diabetic sufferer in my family and they recieve free medication. It would be of a greater and fairer benefit to someone like myself if chronic migraine sufferers received the same care and consideration.
I welcome this opportunity to highlight my life as a disabled person in Ireland. In Donegal we have no accessible public transport. Driving supports have been withdrawn by this govt. They are moving to somewhat rectify that now pre election. Too little too late. PA supports that are adequate are sometimes hard to get. I was trying to get these supports a couple of years ago in order to maintain the level of independence I enjoy. I was offered 2 hours a week. This was impractical and not going to help at all so I appealed and my appeal was turned down. In the lifetime of this Govt prescription charges have been very difficult to cope with. It meant decisions around medicating or eating having to be made at times. No ratification UNCRPD. The list goes on. I’ll leave it there for now though.
Does That Seem Fair To You? …
My name is Áine Mc Donnell, I am 39 years old and I live in Belmullet County Mayo. I have Spina Bifida and Hydrocephalus as well as a visual impairment. I currently live with my parents but I am hoping to move out into my new house in the near future, I need a personal assistant to enable me to do this but the government are not allocating enough funding for PA hours and there is talk of yet more cuts by the HSE to PA services this is a disgrace in this day and age. I would like to have my own place and live independently but government cuts to services could jeopardise that. Does that seem fair to you?
Watch Kevin’s video now
I am finding it tough at 63 to be fighting a rare disease called mitochondrial disease, its genetic with multiple deletions on the mtDNA. I have this condition with my identical twin sister.
It is an energy deficiency disease, we are failing to produce energy.
It is metabolic, muscular and a neurodegenerative neuromuscular disase,we have many autoimmune diseases that also seem to be involved.
When we are told that every person is individual and they can now have a say.
do we have a say?
It is tough, the battle is very tough for me and my sister. We’re sick of fighting the hse for services and support.
I am not able for a fight that shouldn’t be so hard. We need the government to prioritise people such as myself and my sisiter and make people fighting a disability their number one social justice concern in 2016
I have Relapsing and remitting MS, as well as being partially sighted. I can only see through one eye. I’ve always wanted to live with dignity and respect. I’ve earned a PhD in medieval history, and have published innumerable articles and books. Also I know a number of European languages.
But I can’t because I’ve never been given a chance to work but have suffered continual discrimination. I have also been forced to rely on a means-tested benefit. This was augmented by a meagre Blind Welfare Allowance paid by the HSE, but because the latter found out about some laser surgery I was due to have from my former MS case worker they’ve demanded I reapply for this – rather difficult as I can’t walk on my own and my sister, aged 73, can’t leave the house, a situation well known to the HSE. She has been consistently ignored ever since my father went to a Nursing Home where he died in 2014.
Does That Seem Fair To You? Of course it’s not. This present carry-on is both unjust and wicked. I may be disabled but I’ve always had so much to offer the community, but because I’m seen as an easy target I’ve been the subject of discrimination and victimization from various public authorities. For a number of years I wrote a popular column on local history for a paper which sadly went out of business. I then approached another, longer established local paper to see if they wanted to do something similar. My letter when unanswered. Last year another local paper decided to institute such a column, but I wasn’t even asked to do it. Instead an under-qualified librarian was picked, who therefore got a second job and a second income. When I wrote a satirical piece about this on my blog I was visited by members of the Gardai Siochana who didn’t show me any ID and put my sister out of the room. I have turned my back on history now – it’s a thing of the past anyway! Currently I’m studying my third MOOC on an International Law topic. I’m an active member of my local Toastmasters’ Club and am presently the Vice President and Public Relations Officer. If onliy I hadn’t chosen to study history in University maybe things would have been different, but to be honest I think that there is such a culture of discrimination in this country, especially towards the disabled, that I’d never have succeeded in any field. So would I have been better to sit in the corner like little Jack Horner, declining even to learn how to read and write? I’d certainly be entitled to just the same pitiable amount of money from the government.
When I need to be admitted to hospital, I need a private room, as I have other needs outside of why I would be admitted to hospital. My medical card dosen’t cover this so I have to take out private health insurance, yet at times I am still unable to get a room. I’m not a snob, but I snore very loudly, and need to do personal care which effect other patients. Other people with disabilities have similar needs.
Does That Seem Fair To You? …
Hi, my name is Mairead Manton
I have had my own flat for 12 years. It is great having my own place, I am my own boss. It can be lonely at times but let’s face it; people can be lonely in a group too. We bring ourselves wherever we go.
Its very important for people to start working on communication as early as possible. You can never tell doors might spring open or maybe someone could be wrongly diagnosed like a slow learner when in fact they are clear as a bell. I call my communication aid my mouth. I can’t be without my mouth.
It’s not a Dublin accent, but it’s better than before. I don’t care any more, last year my mouth kept needing dentures, a voice is better than no voice. It’s better than having a paper mouth, when I was using an alphabet chart, new people said, “it is great, you are learning your a b c.”
Marrying to tech is like having a foreign husband- you have to use small words in case people misunderstand you. Tech needs to be simple to use, some people might lose interest in using if it is too hard.
When it breaks down some equipment goes foreign, it can takes months to be returned. You can be left hanging like a rag doll if there is no replacement on everybody.
I have been using toys since nineties or earlier, it gave me a life beyond skies. I began writing poetry at twenty one out of boredom, living in a Cheshire house. There was nothing to do. This is one of my poems.
OH Cheeky Monkey
For calling my wheelchair a buggy
Tighten freedom with a gift bow
Your mind – so fresh and new
So devil, your tongue walks to others and smothers lies.
Remember sweetheart, I am not spending my last chapter
Under woolly power tent
Watch it Baby!
A empty smart lady.
“I’m Willeke. Ten years ago I was diagnosed with multiple sclerosis, a mere two and a half years after moving to Ireland.
Considering MS is neurodegenerative and the central nervous system being involved, access to medication, regular MRI scans, neurological check-ups and other treatment is hard to come by.
Ten years post diagnosis, the total number of active neurologists in Ireland has risen somewhat, but with approximately 30 in total, Ireland is still below the European average. This means that new and often better medication can’t be prescribed quickly enough or isn’t even approved by the NCPE; I had a five year wait for a new MRI scan, and chronic pain management and physiotherapy sessions were reduced to next to nothing.
Advocacy efforts to make the past two governments see the necessity of having more neurologists, more access to treatment and rehabilitation have gone without governmental action plans that indeed would help people with neurological illnesses.
Does that seem fair to you?”
More than 600,000 people – that’s 1 in 8 of us – are living with a disability in Ireland. Two in three of us know or care for an immediate family member, a friend or a neighbour living with a disability.
Together, we are one of the largest groups of voters in Ireland. Yet, we live with daily inequalities and discrimination. Taking a bus, enrolling in school, finding a job, keeping warm: Almost everything is more difficult if you are living with a disability. Disabled people are known to ask their GP which prescription is most important as they cant afford them all, there was nothing done in the last budget to address this ridiculously unfair tax, we did not get the €20 per week rise on the Disability Allowance we were seeking to meet the extra costs associated with disability. Yet ‘retired’ TD’s, ex-taoiseach, etc are allowed to draw exorbitant pensions whilst having lucrative posts (bank consultant etc) and have business interests. It is no exaggeration to say this is vile (for want of a better word). There was no inclusion in the workforce, our government boast and brag of our ‘recovery’ and investment in jobs, – sadly its not the disabled getting these jobs. We c
ould have been given our continuous Disability Allowance whilst working as allowed in the UK (for as long as they need it and irrespective of income earned). We received nothing.
In Election 2016 I am voting to end discrimination against people living with a disability. I am voting for candidates who will work to make disability a priority in the new Programme for Government.
Im Rachael and I personally suffer with NDPH and VVS – I have Neurological migraine attacks daily, pain everyday and nothing has yet ceased my pain and it never will unfortunately, I am hopeful that my team will eventually be able to get my pain to a manageable level that I will be able to return to a level of normality again. Migraines are ranked the 4th most disabilitating disease/disorder in the world by the World Health Organisation. Im a social care worker, I thought I knew about disabilities in Ireland, I was trained to know about them, but even I was guilty of not understanding the depths of just how difficult life is when this is your reality.
Hi, my name is Mary Harney from Tipperary. I am a service user with the IWA, Tipp Town and also of the Moorehaven Centre in Tipp Town. I suffer from a rare illness called Wilson’s illness which means too much copper in my body and due to mis diagnosis, it has effected me in every muscle, so therefore, I suffer from very bad stiffness all over. My walk is not good and I use a machine to communicate with people as I also lost my speech with the illness.
I try to live as normal a life as I can and I love socialising and going out and the one thing that gets on my wick is in some places the toilets are down stairs and I find it hard or next to impossible then to use those toilets so I wish that those in charge would think of people like me when they build those buildings please.
Watch Carol Brill’s video now
Watch Mark Reilly’s video now
Watch Emily Crawley Fay’s video here
Lorraine from Galway talks about epilepsy and the need for reform in the areas of education and employment. Watch her video here
I need affordable medication. I have suffered from chronic migraine since childhood and have been taking preventative medication for 19 years now costing €99/month. But it is not recognised as a Long Term Illness under the HSE scheme. This discriminates against migraine – the 4th most disabling condition amongst women in the world.
I need to do the everyday things I have always done without assistance.
But I can’t because I’m in such pain if I attempt to do so I will pay for it in the long run! I’m a very determined person but feel I’m loosing the real me. Especially when people speak to me in a condescending manner that leaves me feeling belittled and angry. Can they not see the real me behind the disability, I have dealt with this for 33 years and have kept on going. Asking very little of others!!
Does That Seem Fair To You? …
I am the mother of a child with a disability who attends mainstream school in Dublin 8 with the support of enable Ireland. The school is trying to bully us into finding her an alternative placement by suspending her (its a long story which I am happy to share) However my point is that our situation is not an isolated one. The department of education refer us the board of management who ignore us! I want to help your campaign as I believe it is a very important issue. I am involved in the business community and can assist you in making this issue an important election issue, my daughter deserves this to secure her equal place in Irish society in the future.
Step Forward Disability Group Election Manifesto Campaign 2016
Our group is in existence over ten years, some members have a disability, family with disability or an interest in disability. We want to create a greater awareness of the existence and needs of those with a disability in the community. Out election manifesto is about raising awareness of the challenges facing people with disabilities daily.
• Poor accessible transport causes distress to people with disabilities who cannot get out of their homes to access services and supports.
• People with disabilities who reach the age of retirement face the prospect of losing their right to specialised disability equipment, difficulties accessing respite services as they navigate a new system of support when moved on retirement from the National Physical and Sensory Disability Data Base (NPSDD) to older people services.
• Due to the economic downturn rural communities have being systemic dismantled and this has impacted on those with disabilities; services such as banks, post offices, garda stations are been removed or under treat which impacts on the services, safely and support of people with disabilities.
Our campaign is to highlight that the general election is a time to share what is needed with candidates so they have a mandate going forward, which reflects the views and needs of people with disabilities. To ensure proper consideration and consultation takes place when decisions are made at national level which impacts on their lives. For more information on our campaign contact us at 061 383884 or www.hospitalfrc.com/disabilities
My name is Owen and at the age of twenty-one i had a road traffic accident and became a person with a disability. Immediately after my accident I lost my job and was unable to live in my family home. Therefore I ended up living for the next eight years in a residential institution for people with intellectual and physical disabilities. That was 1994 and this is still the situation for many people with disabilities who have a tragic accident and have no suitable accommodation to meet their needs.
Does this seem fair to you?
Roselyn Rafter from Galways talks about the need for a fairer system in the distribution of medical cards
Fiona Casey from Galway, city centre, talks about the need for more PA hours for people living with a disability
After a life threatening road accident a number of years back in which my motorcycle collided with the car of a reckless and dangerous driver, my life changed forever. Taken to Navan Hospital, I spent six weeks there, the first nine days my life hung in the balance, as I was in a coma.
After his six weeks in hospital, I was deemed fit enough to leave hospital, but was considered not well enough to be realised into the care of my parents. I found myself in limbo and was subsequently send to a nursing home by the HSE.
Some ten years after the initial accident and still reeling from the effects of brain damage, I now knows it was wrong for a person in their mid – twenties to be sent to a home in which elderly people go to see out their remaining years. I personally knows of others that this wrong has happened to also.
The nursing home was not a fit or appropiate venue for a young person and it costs the HSE a considerable amount money to house someone there. I now work with an organisation that looks after people with brain injuries.
I feel rather than have the HSE spend money for people to go to inappropriate accomadation, they need to invest money in the training of more medical qualified personnel, such a physios and more importantly neuro physios, whom are quite scarce in Ireland.
This is unacceptable in 2016 and if the governmet invest money more wisely in medical training, it will see people with brain injuries possibly return to work quicker and allow them to contribute to soceity in a meaningful manner that helps they gain their independance back.
My name is Rachel Creevey. I am a young university graduate from Dublin. I suffer with Brittle Bone Disease (Osteogenesis Imperfecta). I rely on an oxygen tank and power chair to help with my mobility and to help the balance of my carbon dioxide and oxygen. As a wheelchair user, one of my main issues is with accessibility in Dublin today. Pointing to the Dart as a main focus of concern, I am agitated and aggrieved by the capital service. Although the Darts gets many commuters to their place of work and living on time, seven days of the week, it is not quite this straight forward for people living with a disability. It was widely known that Dart stations across the greater Dublin area require 24 hr notice for people with a disability whom might wish to travel and traveling after 7 pm is not possible. As if this isin’t unacceptable enough, there are constant stories of stations soon to become un-manned completely and stories of people being asked to travel at a particular time, because it suits the staff rather than the user. Naturally and correctely I feels this to be of a major inconvenience and against my right to independant living.
In accordance with some of my work with the Irish Wheelchair Association, I run disability awareness workshops in local schools and done one most recentely in Artane, Co Dublin. The purpose of these workshops is to encourage body abled people to look past a disability and talk and treat the person as normal and as they would wish to be treated. This is something that could be rolled our nationally with people like myself and others willing to help.
I feel the attitude of certain persons and organisations in modern Irish soceity needs to be changed dramatically. Pointing to the Luas service as a prime example of modern transport, I feel the Dart service and some aspects of Dublin bus need to fall in line with a modern day European city and the Government need to make disability awareness and solutions a prime factor in 2016.
I feel people and indeed the government must believe in our abilities, not disabilities.
Please watch this Disable Inequality campaign video and find out how you can get involved. ISL & Subtitles are applied. To read the subtitles please click on the cc button on the bottom right of the screen
Please watch our campaign video and find out how you can get involved with our Disable Inequality campaign
Marian from Galway talks about the need for a greater financial allowance for visually impaired people with a guide dog, especially when when it comes to the cost of looking after their companion
Aaron from Dublin expresses his views on the problems concerning the Dart and it’s restrictions on people with disabilities.