MY NAME IS Áine Mc Donnell, I am 40 years old and I live in the small town of Belmullet in Co Mayo which is a farming area with a population of approximately 1,000 people living in the town.
I was born with Spina Bifida Hydrocephalus, which means I use a power wheelchair to get around.
I am completely blind in my right eye as a result of a corneal ulcer which I developed when I was three years old as a result of meningitis. I also have little to no peripheral vision.
On a daily basis, I am supported by my Personal Assistant (PA) Cathy who is a very important part of my life. She helps me with everyday things which people without a disability may take for granted such as showering, dressing and getting from A to B in my specially adapted van.
Having Cathy gives me choice and independence, and helps me to be more active and
productive in my local community and in doing things for myself with her support. Without Cathy I would have to rely on my parents to assist me in all of my personal care. I would become very isolated as I would not have the freedom and independence to be a full and productive member of my community.
Vital
My PA service is provided by Irish Wheelchair Association (IWA) and in addition to providing personal care my PA also provides me with transport using my own adapted vehicle.
Without the PA Service, I would not be able to be as involved in local groups and events which I have a huge interest in such as the IWA Media Group or going to concerts.
At the moment I have 12 PA hours per week, which are supposed to cover all aspects of
personal care as well as social hours which is not remotely adequate. One of the problems is that the HSE do not see social hours as being important, however to me social hours are just as important as it gives me the ability to go out and socialise with friends, this is vital for my mental health and stops me from becoming isolated.
At the moment I live with my parents as there are very few housing options for people with disabilities in rural Ireland. Due to the lack of accessible housing most people with
disabilities, like myself, are relying on family or having to move into accommodation which is not suitable to their needs, such as community hospitals and nursing homes. I often worried about this as I moved into adulthood as I did not want to end up being a burden on my parents or siblings with regard to my care, I also certainly did not want to live in a nursing home or sheltered accommodation as I got older.
I feel very lucky because I will be moving into my own purpose built house in the next few months. The house will be fully accessible and adapted to my needs. This would not have been possible without IWA in partnership with Mayo County Council. When the building started I had a meeting with an occupational therapist and she assessed me for my needs as regards aids and appliances and modifications that I would need to make my new home accessible.
With this move comes the need for more personal assistant hours and I have applied for an extra 14.5 hours which I will need to allow me to live independently.
Transport
Like many people, after I did my Leaving Certificate I attended college. Unfortunately, this did not work out for me for a variety of reasons. After trying college I looked for
employment, mostly administration and office work which wasn’t a field I was particularly interested in. However, I was inevitably pigeon-holed into this type of work due to my disability.
A huge concern for me in my search for employment is that I am only allowed to work up to 14 hours a week before my benefits will start to be taken away along with my medical card.
My medical card is vital for me as health insurance is very expensive and it doesn’t cover
any illnesses related to my existing disability. If I had the security of knowing my benefits
and medical card would not be impacted, the search for employment would be less
stressful.
As I have mentioned earlier there are many issues that hinder me from living independently; the need for more personal assistance hours, appropriate housing, the security of a medical card and the search for employment are all huge barriers to people with disabilities.
Transport is a huge issue for me living in rural Ireland. Wheelchair taxis are very difficult to access and if you do want to book one it must be arranged several days or even weeks in advance.
There is a Bus Éireann bus service in Belmullet but I cannot use the service because the bus stop is not accessible and the lift on the bus cannot be used as a result.
When I need to travel by rail I need to contact the station 24 hours in advance to let them
know that I am travelling, so that a ramp is available to allow me to board the train and to ensure there is a staff member there to assist me. There have often been times when the station has been unmanned despite notice being given. When this happens it can result in delays which can impact on the wheelchair accessible taxi I pre-booked.
I have been involved with IWA for many years as both a member and a volunteer. I attend the Association’s busy Day Centre in Belmullet three times a week. In the centre I take part in a range of activities and I also avail of Reiki and massage to help with pain management and anxiety as well as using our gym to keep fit and lose weight.
Recently, I assisted IWA to launch their pre-budget submission in Leinster House in front of over 55 Dail members. The Irish Wheelchair Association has made several recommendations for Budget 2017 and all of the issues raised affect my life and my independence along with thousands of other people with disabilities living in Ireland.
For me, living with a disability can at times be difficult, but if you live in a rural area it is even more difficult to access public amenities and carrying out everyday tasks due to poor access, and lack of public transport.
People with disabilities deserve to live their lives independently and to be treated with
dignity and respect without extra barriers and obstacles being put in our way. I am just
asking to be able to live the life I deserve and for the Government to make this possible!
You can find out more about the Irish Wheelchair Association here.
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