Julie Helen: 'With different decisions, I could have been Grace'

The Farrelly Commission, which finally reported on the investigation into “The Grace Case” is over. 

The headlines were a flash in the pan, now they are gone. Grace is still in my head. Can I tell you why Grace is so strongly in my mind?

With just a couple of different outcomes or decisions, I could have been Grace.

I have cerebral palsy, a disability which impacts my life significantly. It has a spectrum which very easily could have meant I was non-speaking for my whole life. 

When my parents were given my diagnosis in 1986, the first piece of advice which a consultant thought to be a solution was to institutionalise me. I was super lucky where I landed.

Mum and Dad, never had any intention of walking away from me or, indeed, three years later walking away from Diarmuid, my brother who was born with Down Syndrome.

Mum spent time supporting new parents in the years after we were born and she talks about babies who were left, parents who walked away. 

At that time, the diagnosis of a disability was not easily accepted by wider society, so when I think of Grace, I think it could have been me, it could have been us and if I was relying on state services alone, even now, my life would be so different.

The most recent report published was supposed to provide answers as to why Grace was left in the wrong place for years upon years. I wonder where she is now, and I hope she is surrounded by love and support.

When the report came out, I was initially surprised at myself, all I could feel, was a sense of “here we go again.” I don’t want to feel desensitized, but there was a very familiar cycle that occurred.

The report was published, there were a couple of days of outrage, criticism and response, and then there was this weird kind of silence when everybody had said their piece, and nobody really knows what to do next.

There are a couple of problems that keep people with significant disabilities in a loop where nothing changes. This is harsh to say, particularly when there are really good people working on the ground in disability services shouting and screaming about rights every day of the week, and there are family members trying to advocate left, right and centre, but a lot of the time they feel they have nowhere to turn or if they turn to the HSE or service providers, they get so caught up in processes and procedures and it is the worst kind of vomit inducing rollercoaster.

Grace first needed help when she was a child, but we have no advocacy service for children in Ireland. 

We have a National Advocacy Service, but it only has a remit to work with adults with disabilities so there is no independent body for children with disabilities. If there was, there would be somewhere for the voice of a child to be at the centre of an issue or concern before things get too big.

We also have far too many people living in institutions; over 1,200 disabled people under the age of 65 are living in nursing homes and over 2,000, and probably more, people with intellectual disabilities are still living in older group settings, and another swathe of people are living with elderly parents and are just stuck. And what about the people we know nothing about, who are struggling in silence, with nobody to speak up for them.

We need to do better, we need to keep talking about Grace, and we need change.