VICTORIA WHITE: It’s shameful that no one cares about the carers at Christmas

Bernadette Scully nearly died by her own hand, because, as a carer, she had no right to support, writes Victoria White.

I HAVE often written about people who work at Christmas. One example was the heart-warming story of ex-TD, Jim McDaid, as a doctor on call.

This year, the media highlighted a young garda on a bicycle who will work at Christmas. After all, “crime doesn’t stop because of the season”. And this newspaper featured a gorgeous piece on the volunteers who staff the Cork Penny Dinners.

But I can’t believe that all those years I never once thought of carers working at Christmas until I became one. Carers don’t get time off ‘in lieu’. Some of them never get any time off at all.

They grind on and on, giving medication and massages, pulling on socks and pulling off bandages, cooking and cleaning up, calming, reassuring, caring. For many carers, the only difference that Christmas makes is that they are on their own, because the professional support care services take a break.

The trial of Bernadette Scully, for the manslaughter of her chronically disabled daughter, Emily Barut, has brought the plight of carers into sharp relief. In a society obsessed with the rights of the disabled — though seemingly unable to do much to deliver on them — carers have no rights at all.

No right to an income. No right to respite. No right to holidays. No right to a decent pension. No rights at all.

Bernadette Scully nearly died by her own hand, because, as a carer in this State, she had no right to support. At times, she was left caring for Emily night and day, as the little girl screamed with pain, in a situation that might be described as torture.

The numbers of suicides of carers, sometimes coupled with the filicide of their disabled off-spring, is not known, but it is not a particularly rare act. In the US, the National Association of Family Care-givers found that between 40% and 70% of mothers of disabled children had depression, while a quarter to half were in a major depression. Mothers of the intellectually disabled and autistic were the worst-affected.

Some years ago, I interviewed the jolly young mother of a profoundly autistic girl. The mother said: “When I hear of a woman driving off a cliff with her family, I get it.” The interview is referenced in the UCC/Inclusion Ireland report on the needs of siblings of people with autism (ASD) or intellectual disability (ID), which was published last week. It spells out boldly how the new, personalised funding model, which has the money following the disabled person rather than going to institutions, could increase the care demands on the families of people with ASD or ID.

It is a model, goes on the report, which “presupposes the existence of informal, community-based, and family-based support networks”. It calls this presumption “problematic.”

Very problematic. We are transitioning from an institutional model to a community-based model for the care of the disabled within our society, but the community support simply isn’t there. All that’s there are loving families, which, more often than not, means a loving mammy. She may be amazing, but she is not indestructible, though Irish society seeks to prove she is by banging her through the emotional equivalent of desert terrain, as if we were testing a car, like in those old ads on the telly.

I’ve been doing a course, about my autistic son’s transition to adulthood, with Geraldine Graydon. Geraldine is national director of the National Parents’ and Siblings’ Alliance and she has brought home the shocking fact that disabled teens have no right to services or education once they turn 18. That is what the State argued when it took Kathy Sinnott to the Supreme Court, in 2001, and it is to our eternal shame that the State won.

A teen with ASD or ID may have the mental age of a five-year-old or 10-year-old, or the coping skills of a toddler, but, as far as the State is concerned, he is on his own. His education, his transport, and his parents’ respite are stripped away, as if the teen has ‘grown up’ and has left his disability behind.

Graydon has heard the words ‘helicopter parent’ used to describe parents who argue their 18-year-olds need to be supported as much as a child.

One mother at our workshop told of how her disability officer said her son could get the bus on his own to his training placement, when, in truth, he can’t even cross the road safely.

It’s shameful that no one cares about the carers at Christmas

We don’t even know how many adults with ASD/ID we have in this country, or what their care needs are.

However, in Northern Ireland, an excellent study, ‘I Exist’, about adults with autism, was published in 2008. It showed that 63% of adults with ASD were living at home and 40% of them needed care 24 hours a day. Depression was running at 57% in these adults.

One can only imagine the rate for their carers, when you read the testimony of a mother of an ASD adult: “He has to be motivated to get up, usually not until the afternoon. He does not prepare or eat any meals, until I return from work at 5pm. He spends all the time in front of the TV and goes to bed in the early hours.”

Nearly all of these adults with ASD believed they would be less isolated if they had more support. So would their carers. But no-one’s talking about them.

There is a lot of kerfuffle about when Ireland will ratify the UN Declaration on the Rights of People with Disabilities, but none whatsoever about the basic human rights of their caring parents and siblings.

Ironically, many carers can only dream of the ‘rights’ claimed by the UN Declaration for their disabled charges. Which mothers of adults who have ASD/ID get to “choose their place of residence, and where and with whom they live on an equal basis with others”? What access to paid work do they have?

The only way many carers would get a break this Christmas would be by abandoning their disabled sons and daughters, sister and brothers, to their fate.

In a slow news season, the sight of thousands of intellectually disabled adults rocking, humming, twitching, wandering, or shouting outside Leinster House would wipe Apollo House off the front pages.

But we wouldn’t do it, because we love them with a love which is murderously exploited by society to make carers the workers who have no rights, the people who always work at Christmas.

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