BEING A WHEELCHAIR user is not how I imagined my life – but that all changed when I was diagnosed with a neurodegenerative disease at the age of 13.

By age 18 my mobility had deteriorated to the point that I needed to be in a wheelchair to mobilise.

Now, as a mother myself, with a fun two-year-old toddler, I rely on my wheelchair to get out and about and to juggle the many joys, challenges and surprises that parenthood presents.

The condition I have is an extremely rare form of cancer called neurodegenerative Langerhans cell histiocytosis or LCH for short.

I was initially diagnosed with this illness when I was three years old and living with my parents in Manchester.

After years of treatment, I went through a period of remission before it returned and developed into a more complex variant of the condition.

During my teenage years, I found my mobility gradually declining. Initially, I used a segway to get around, before eventually using a wheelchair. Despite my illness, I was determined to go to college and I completed a degree in Journalism in 2017.

I am a capable, well-educated mother of one, with a loving partner. Yet, my options to choose how I want to live my life are being reduced because there isn’t enough investment in public services that are accessible for my wheelchair.

Did you know that only one wheelchair user can travel on the bus at any one time? Two friends who are wheelchair users cannot travel together on the same bus.

Taking public transport is a game of roulette. There is a wheelchair bay on the bus but it is not guaranteed that I will get this spot. If another wheelchair user or even a pram that can’t be folded is already on board I have to wait for the next bus 

I have weekly appointments in Beaumont hospital for chemotherapy. There is only one bus per hour – so if I cannot board the bus that means a wait of up to two hours to get home. 

If I want to travel on Irish Rail, I have to give 24-hours’ notice. I don’t use the train often, as I live in Dublin, but the last time I booked an online ticket for the wheelchair space to travel to Maynooth, when I arrive there were people standing in the space who refused to move and there was no staff around to intervene.

The issues with public transport mean that I don’t get out of the house very much. It also limits my options in terms of employment. How can I commit to be in work at a certain time if I cannot be guaranteed that I’ll be able to board the bus?

I depend on a personal assistant, who supports me to carry out day-to-day tasks to assist me in living an independent life. This is practically impossible as I have only been allocated 14 hours per week from Monday to Friday, which is under three hours a day.

Since I live with my partner and son in my parents’ house, it is assumed that they are available to look after me for the other 154 hours per week. 

But both my parents are in full-time employment and my partner is in third level education. So most days my ability to live independently is severely restricted and I have to plan very carefully when to use my precious 14 hours of support per week. 

As of yet, I have not managed to gain employment and disability allowance does not stretch to purchasing a home.

We have been on the social housing list for three years and are hopeful of getting our own home one day. But there are currently more than 5,000 people with disabilities on the social housing list and some of them have been waiting ten years.

What I need from this Government is to treat me as a person, as an equal and to respect my human rights. 

I am a member of the Irish Wheelchair Association and this week, as part of our pre-budget submission for 2020, we are calling on the Government to really listen to what wheelchair users and people with disabilities need.

We’re calling for truly accessible buses, trains and taxis. We are calling for at least 7% of social housing units to be wheelchair accessible to agreed best practice design standards.

We also want a review of the number of hours of support we receive us and for appropriate funding to be allocated.

People who use wheelchairs can be seen as vulnerable, but we are strong, determined and resilient people who can contribute to society like anyone else – if the barriers to us doing so are lifted.

We should be able to take up employment, live independently and enjoy equal rights to our peers.

A little investment in accessible public transport would be a welcome start. 

Niamh Ní Ruari is a journalism graduate and mother of one from Beaumont in Dublin. 

The Irish Wheelchair Association has criticised the Government for finding €3 billion to connect people virtually – when it has failed to physically connect wheelchair users to their own communities at a fraction of the cost.