Life was always hard, but I am a shell of the person I used to be

My name is Laura and I am a full-time wheelchair user from Dublin and about to turn 40. Before I tell my story I want to say I am fully accepting of my disability. It’s all I have known. But are there parts that bug me every single day? Hell yes. I feel I need to use my abilities as a writer and blogger to highlight the merry-go-round that disabled adults face every day to get services and live as meaningful a life as possible.

My life on paper looks great. I co-ordinate a mattress recycling service. I use a power chair. I have my own accessible van driven by my assistants and I have a good allocation of assistant’s hours.

But my life is far from perfect and my bedroom has slowly become my world over the past three years.

As I sit here writing this, it’s a Friday morning. I run my own personal assistant service through a well-known service provider (a different provider to any I will mention later in this piece). Many aspects of this service are great, as I have control of everything from recruitment to rosters, but days like today, where I have no service due to holidays and sick leave, heighten the harsh reality of the dependency I face every day. I now must wait four hours to get to the bathroom and be assisted by family. I must limit my fluids and I’m generally on edge.

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Please show me someone who would be comfortable with this being part of their lives on a regular basis.

I got a new chair nine months ago and I have had nothing but mechanical and seating issues since getting it. The chair has been recalled and deemed unsafe, but I am still waiting for an appointment with my seating service and the supplier to swap the chair. Nine months on there’s no sign of the chair being changed or the seating being reviewed — the latest email I received cited staff shortages as the reason for the long wait. As a chronic pain sufferer, my seating is a vital part of my clinical services. Why is it okay for me as a full-time power chair user to be left in this discomfort every day?

I am a shell of the person I used to be. Life was always hard but, my god, pre-pandemic was a walk in the park compared to now. I had to leave the job I was in due to Covid vulnerability, and when I returned there was no role for me, as my duties had been given to others during my absence. This meant I was at home. I lost the PA I had every Saturday for social use. I loved the cinema, concerts, shows and eating out.

I am now working from home in a new role for a mattress recycling company. While I am endlessly grateful for the opportunity, I am sad to say that my home and bedroom have become my world. This is a far cry from where I dreamed I would be five years ago.

Six months ago I was taken to hospital due to emotional stress for a couple of days. I want to stress I am still the same person and very proactive in my own life, this time in my life was due to the stress of living life in a pandemic as a disabled person who was screaming for services and support. The effect of the pandemic on disabled people has gone under the radar in the past three years.

From 2018 to 2020 I had been seeing an amazing psychologist in a well-known disability service (the same disability service who are responsible for my power chair), I have always dealt with extreme anxiety and seeing this psychologist — he was a lifeline for me. In December 2020, this service was discontinued for adults, with no plans to replace their adult services psychologist.

Since being hospitalised in late February this year I have been offered no psychological supports, even with numerous letters sent by the hospital to various services. There’s no sign of any supports coming my way and from research the average sessions offered is 12 weeks. How is an adult in my position (or any adult for that matter) meant to process years of trauma and plan for the future in just three months?

Do adults with disabilities not matter in this country? I would argue, as we get older we need more supports as disabilities can show deterioration, and the reality of the future looms like a dark cloud and fills me with so much anxiety.

As I turn 40, I won’t lie, I dread the future. But I must take it day by day, be grateful for my amazing family who help me every day physically and put up with so much when I am not feeling myself. To them, thank you so much and I am so sorry for my bad days.

I am about to become an aunty for the first time which is an absolute dream come true. I don’t know what my future holds, but I have goals — I would love to do a social care degree and make change on the ground. I would love to write a book, telling my full story — believe me I have many more stories to tell.

I must hope that in the coming months I get the services I truly need and deserve.

To anyone who relates to this article, I want to get the message across that you are a person not just a disability. It’s not easy to get the services we need, and the cost of disability is not recognised by the Government.

But you are not alone. We can keep up the fight together. Keep shouting. Quiet mice get nothing.

@lauras_life_on_wheels