Julie Helen: ‘I feel the cost of disability in my pocket daily’

I am sitting in front of my computer thinking about a public consultation I want to contribute to.  For me, the stakes are high; the outcome of this consultation could have a significant impact on my household.

The consultation is about the cost of disability and suggestions for how a cost of disability payment might work. The Department of Social Protection is seeking contributions to this consultation.

Initially, I was wondering if I should bother at all sending in a submission because there are people far more qualified than me to put forward important views. But, I always come back to the same point. Why not me? It should be me, it impacts my life and family.

I am disabled. I feel the cost of disability in my pocket every day. I often have to find expensive workarounds to make my life easier.

Only last weekend, we were about to leave the house, and I stood up out of my wheelchair and my dress got caught, pulled and ripped all up the side, rendering me entirely indecent, so I had to change my clothes and throw the dress in the bin. I had only worn it twice and it hadn’t been cheap, but I knew it was beyond repair. One dress seems like a tiny cost, but each one adds up. I notice when I am buying kitchen aids and appliances that the sturdy ones, with buttons or handles I can manage, are all more expensive, or if I buy grated cheese rather than a block to save my energy, the bill rises then too. If I was to list all the costs or inconveniences of having cerebral palsy, this story would turn into one long list of moans and groans and that’s not what I want at all.

I love my life; I know I am very fortunate to be able to do all the things I can do and to have built the life with David and Ricky that we have. I think it is important to acknowledge the cost of disability though and to highlight when consultations are happening because together, we can make a difference.

The Government is looking for views from disabled people and family members and carers. That could include you. I know many readers support family members who have a disability, and when you do that, you are picking up some of the tab with your skill and support. Most people in caring roles can’t really quantify the impact they are having because they support the person out of genuine love and care, and it is such a natural thing that a lot of the time, we don’t think about it enough.

If you are a disabled person, a family member or a carer to someone who has a disability - I urge you to go onto www.gov.ie/cod. Have a read of all the guidance - there is a lot of information there and you will find it in a format that suits you best.

I have heard through my own circles that there are a large number of submissions already, but your one counts too. Your story counts, your experience counts, your views count. The more real stories we can tell, the more likely we are to be listened to.

The Government itself acknowledges that disabled people have extra costs in things like transport, heating, electricity, equipment, healthcare, needs for assistance and more.

We have an opportunity until April 7 at 5pm to tell them what those extra costs are and what a support payment should look like to work well. Make your story count.