Seven days in the life of a wheelchair user

Activist: Eileen Daly says successive governments have failed disabled people in Ireland. Photo: www.doug.ie

Eileen Daly

February 01 2018 02:30 AM

After a rail-access launch left Dart passengers stranded, Eileen Daly, a 42-year-old woman who has lived with disability since birth, reveals in her diary the reality of being disabled in Ireland today.

Monday - I lie in bed and wait for my personal assistant Laura

The alarm clock buzzes at 6.30am. I lie in bed and wait for my personal assistant Laura and the day begins. Laura assists me with my active and busy lifestyle. As a 42-year-old woman who has lived with disability since birth, I use a wheelchair and a myriad of other equipment and technology to facilitate my mobility. However, my personal assistants (PA) whom I recruit, manage and supervise myself, provide me with the autonomy and freedom to live my life and contribute to society.

Personal assistance is best described as the cornerstone of the Independent Living Movement. 'Independent living' means that people with disabilities have access to the same rights, life opportunities and choices that our non-disabled brothers and sisters, neighbours and friends take for granted. That includes going to the neighbourhood school, using the same bus, securing employment that reflects our education and abilities, having equal access to the same services and establishments of social life, culture and leisure.

I work as a student support officer in a partnership service between the National Learning Network, a division of the Rehab Group, and the City of Dublin Education & Training Board. One of the reasons I enjoy my job is I never know what a day will bring.

I have an adapted vehicle so fortunately I do not have to battle my way on public transport. I have an open insurance policy which means that my monthly premium isn't cheap. However, many people with disabilities have to negotiate public transport each day.

Twins Margaret Kennedy and Ann Kennedy protest before the launch of the Dart Improved Accessibility Pilot at Connolly Station. Photo: INM

A pilot initiative which was launched this week means that wheelchair users are required to give four hours' prior notice if you wish to travel on the Dart. Whether it's four hours or 24 hours is irrelevant, it's four hours too many. Failure to provide four hours' notice means you are not guaranteed assistance to access/exit the train if you require assistance.

Minister Shane Ross also failed to attend the launch. Actions speak louder than words and it highlights how this Government continues to view people with disabilities as second-class citizens. Perhaps the minister doesn't want to confront us, but we are not going anywhere.

After work on a Monday, it's time to head home and catch up on Game Of Thrones and face the mundane task of meal planning for the remainder of the week.

I also like to journal before bed each evening. I use writing as a way of expressing my inner thoughts and it is also an impetus to motivate me to plan and push myself to follow through on my goals.

Tuesday - I use the pool in Trinity College

I have meetings with students and plenty of calls and paperwork to get through. I have amazing days where I feel like I can take on bureaucratic systems and structures, while other days can be frustrating due to inaccessible buildings and the fact someone parked his/her car on the dishing of the pavement, preventing me from entering the building with ease. Experience has taught me to always leave additional time to negotiate these all too common dramas in my everyday life.

I feel like a swim this evening - I use the pool in Trinity College. It's a little on the cool side, which can be good as it leaves me with no option but to move faster in the water. There is a pool-side hoist available which enables my PA to ease me gently into the water. Appropriate changing and showering facilities are also provided. Accessible and inclusive design in sport and leisure facilities is good business sense and greatly reduces fear of difference.

Wednesday - I can empathise and relate to my students' panic and self-doubt

As a first-year student in UCD in the mid-90s, college was a challenging experience for me. Thankfully, I eventually swallowed my pride and got the support I needed. I got over the hump and have enjoyed, and sometimes thrived, in academia since. I can empathise and relate to my students' panic and self-doubt. We chat and they tell me their worries and frustration in relation to adapting to the demands of academia and assignment deadlines. Together, we agree a plan of support and action. I usually refer students to other support services within the college. We all have the ability to succeed with support, teamwork and a little creative thinking.

I'm currently Chairperson of Greater Dublin Independent Living (GDIL). The aim of GDIL is to advocate and support our members, who are people living with physical and sensory disabilities, to experience independent living and to advocate with them and for them. Some members have made the successful transition from institutional settings to independent living in the community.

Thursday - I meet a 25 year-old girl who has just received a diagnosis of high functioning autism

I meet with Fiona, who is 25 years old and has just received a diagnosis of high functioning autism. We talk through the report written by the psychiatrist which outlines strengths and challenges in the learning environment. I am fortunate to have experienced both segregated and mainstream education provision, and my experiences undoubtedly impact on my work.

People with disabilities are not a homogeneous group, but we are all human beings who just want the right and opportunity to live and participate as equal citizens. As a woman with a disability, I have opinions on a wide variety of issues, but it is sometimes a challenge to have my voice heard if I wish to share my personal thoughts on hot topics such as the abortion debate.

I frequently ask myself why this is the case. I am proud of who I am as a woman with a disability and I know that many of the students with whom I work and my friends and colleagues feel the same. Equality means giving all citizens, young and mature, the right to choose how they wish to live and participate in their communities.

Friday - Cinema or Netflix, and a glass of red wine

Friday is usually my day for catching up on paperwork. The volume of paperwork required as a co-ordinator of the service, with responsibility for the day-to-day running of the service in three distinct and very different colleges of Further Education, is quite significant. A flurry of emails, filing, case notes and report writing consume me. Sometimes the day goes as planned with all tasks completed by close of business, while other days do not go to plan as the phone is constantly ringing.

Some people go out on the town on a Friday - I prefer the cinema or Netflix, and I'm also partial to a glass of red wine!

Saturday - Whelan's on Wexford Street or Vicar Street

Saturday morning usually involves mundane tasks such as doing my weekly grocery shopping. Sometimes I go myself as I can adjust the height of my chair to reach the shelves. On other occasions, I give my PA a list and she goes for me.

I enjoy meeting friends for a coffee and I may have a quick browse in the shops on a Saturday afternoon. In shops and cafes, access is a crucial factor. I need level access with sufficient space for my chair and accessible bathroom facilities. My routes into town are well-trodden paths and if I want to try somewhere new, I only trust the recommendations of my peers who have been there before.

I love music. My favourite way to spend a Saturday night is at a gig. I frequent Whelan's on Wexford Street or Vicar Street. I think that smaller venues are usually best for wheelchair access and seating is generally good. However, I never object to a gig in Marlay Park. Outdoor gigs rock!

Sunday - a pot of coffee and some chick lit

I like lazy Sunday mornings - a pot of coffee as I read some chick lit, such as Marian Keyes, with music in the background is idyllic. It recharges my batteries and it's good for my soul.

Despite many "promises", the Government failed to ratify the UN Convention for the Rights of People with Disabilities (UNCRPD) in 2017. The scant debate that took place highlighted issues and concerns in relation to the gaps in the legislation. However, ratification of the convention will fail to make real difference to the lives of people with disabilities. Ratification does not equal resources. Change cannot be implemented without sufficient economic and infrastructural resources to support it. I would argue that the biggest barrier to equality for citizens with disabilities is the continued unwillingness of successive governments to view disability through a human rights lens.

Eileen Daly is a disability activist and works in National Learning Network Student Support Services, a division of the Rehab Group.