‘It can feel like living two lives at the same time’:
We can’t fix the medical condition but we can try to fix the daily battles we all face
I’m the second of five girls. I grew up as they did, a happy healthy child. We lived by the sea and spent the summers swimming and crab fishing. That sounds idyllic. Of course we fought with each other in equal measure, as most siblings do.
I was born with a disability. But I didn’t know it until I was in my early teens. Nobody did. I was diagnosed with a rare muscle condition when I was in secondary school. I remembering walking into the doctor’s office and hearing the formal diagnosis. I also remember walking out the door. While everything had changed, I told myself that nothing would change.
I went back to school the next day, and if anything, it made me focus more. My older sister did her Leaving Cert and went on to college in UL. I followed the next year. I qualified as a solicitor in 2010 and have been working in McMahon & Williams where I trained ever since. That sounds straightforward.
During the same period, I was attending lots of medical appointments, in Ireland and England. I lost the ability to walk and began using a wheelchair, and with that I lost the independence to do the everyday things that I had taken for granted for many years. But regular life was busy.
I tried to focus on the next exam, not the next medical appointment.
I have two diaries on my phone. One is for my regular life – work, meetings, weddings. One is for my disabled life – doctor’s appointments, organising PA hours and rotas, wheelchairs, cushions, blood tests, shower chairs, physiotherapy, hoists, prescriptions, splints, air mattresses, injections, nebulisers, pain killers, scans, (and not forgetting appointments for my assistance dog Gina!). Nobody teaches you how to live your disabled life. You learn pretty quickly that planning is key.
It can feel like living two lives at the same time. You can’t separate them. The challenge is to try to balance them. Friday two weeks ago I was in court. The following Monday I was in bed for a week on a nebuliser. You can do your best to control, and plan and balance, but sometimes your disabled life takes over. Sometimes, when I’m in bed, I look at the empty wheelchair and I stop for a minute. I do actually ask myself, did this really happen. By complete accident, there’s a family photo of my sister’s wedding hanging on the wall just above where I park the wheelchair at night. My focus always quickly returns to that.
I know that I have a disability. It’s impossible to forget that.
Ready for work
This is where the two diaries come in. I plan my working week as anyone would. At the same time, I plan who is coming to get me up and dressed and ready for work in the mornings. I plan my medication and prescriptions, and physiotherapy appointments. Then there are the things you can’t plan for – hoists and equipment breaking down, chest infections, doctor’s appointments, waiting lists for wheelchairs, pain. We all know the feeling when you need a day off from work. You don’t get to take a day off from disability.
If you need help to get up in the morning to go to work, this applies at the weekends and when you’re on holidays. Holidays highlight the level of planning needed for disabled life. Try searching for a hotel in Barcelona. Then narrow it to search for wheelchair accessible hotels. Then narrow it to search for a fully accessible bathroom with a roll in shower. Then add an electric wheelchair, hoist, profiling bed, assistance dog. There’s a challenge! This doesn’t just apply to Barcelona. I know of only one place in Dublin that ticks all of these boxes. I go to Dublin quite regularly for work and appointments. I have learned to book my accommodation and transport months in advance. Planning is key.
My parents always focused on my abilities. What is more, when I acquired my disability, their expectations for me didn’t change. They, and my sisters and friends have always supported me. I could be the best planner in the world, but one thing is for sure, I could not live my regular life without the constant help and support from my parents, sisters, friends, PAs and colleagues. Every single day. They too have to plan. Like many disabled people, I am hugely reliant on informal supports and I face the same battles as others when it comes to formal supports, like replacing my wheelchair and equipment, securing sufficient PA hours, accessing public transport.
Unfortunately, we can’t fix medical conditions like mine, but we can try to fix the battles disabled people face every day, because most of the struggles disabled people encounter arise from societal barriers, not from a person’s disability.
We can choose to support disabled people by providing supports such as personal assistance to enable people to live with independence, by universally designing buildings so that they are accessible to all, by addressing lengthy waiting lists for aids and appliances, by addressing negative attitudes towards disabled people.
As a society, we can choose to focus on people’s abilities, not their disabilities.
‘‘ You can’t separate them. The challenge is to try to balance them You can do your best to control, and plan and balance, but sometimes your disabled life takes over
‘‘ Like many disabled people, I am hugely reliant on informal supports and I face the same battles as others when it comes to formal supports, like replacing my wheelchair and equipment
By complete accident, there’s a family photo of my sister’s wedding hanging on the wall just above where I park the wheelchair at night. I qualified as a solicitor in 2010 and have been working in McMahon & Williams where I trained ever since.