Today, 8 months and some number of days after losing my beautiful son Brendan Bjørn, I sold the wheelchair accessible van which carried him to and fro while he happily looked out the windows, a big smile usually on his face. For 5 years, the Brendan-mobile did its job well, dutifully, and was an extension of his all-too-limited freedom. Those four wheels provided him a life outside of the four walls of his bedroom. That is priceless.

Today, there is now just an empty space in the driveway and it adds to the empty feeling in my heart.

I lay in bed last night thinking about loss, about letting go, and about empty spaces. I thought about death. I thought about my own death and wondered, who really would miss me other than my younger son? It’s a genuine question and I think the answer is that no one, apart from my son, would truly ache at my passing and have their life be painfully impacted, as mine and Declan’s have been with the passing of Brendan Bjørn. Have you ever wondered the same?

That honest realisation seems to widen the void that is an empty space in my psyche.

I’ve always tended to look inward. It can be a dangerous direction to explore, but it can also be a revealing journey. Ever since the early days of working on my first University degree, I enjoyed Jungian studies. This journey into the dark space which is the empty space is daunting, though, maybe because that particular dark space actually isn’t empty. It’s filled with pain, guilt, loss, unmet dreams, and more…all of the things which keep one hurting. I tend to keep myself from looking in that direction too often because dealing with the grief at losing my first born son is enough to try to handle. But some moments, like last night while I lie there in my bed alone in the dark, those thoughts just come.

There is still one space which isn’t empty: Brendan Bjørn’s bedroom.

I managed to do a tiny bit of work in clearing out his bedroom last week. One day. The days after that I couldn’t bring myself to do further work on it. I suppose that’s how I know I’m not yet ready for his bedroom to be a space empty of the necessary items for his daily care and life. I’m not ready for it to be a space empty of him.

Not yet.
In time.

I have enough to contend with at the moment with the empty space in my heart.

Carers have battled for too many years for their unique rights to be addressed to have them now conflated with gender equality, equal pay, who does what level of housework in the home, or who picks up the kids from school more often, as the current IHREC campaign is doing (see recent articles and interviews). It only serves to diminish the voice of family carers, as I describe below.

As stated on the Irish Human Rights and Equality Commission (IHREC) website, “The #CareAboutEquality national campaign aims to inform public attitudes on the value of care, the gendered nature of caring, both unpaid and low-paid, and how this impacts on women’s lives in Ireland.”

This campaign stems from the 2019 The Citizens Assembly on Gender Equality https://www.citizensassembly.ie/en/previous-assemblies/2020-2021-citizens-assembly-on-gender-equality/about-the-citizens-assembly/

IHREC is a 15 member Commission appointed by President Michael D. Higgins, in 2014. They are “an independent public body that accounts to the Oireachtas, with a mandate established under the Irish Human Rights and Equality Commission Act 2014 (IHREC Act 2014).” As stated on their website, this current campaign, Care About Equality was based on input from their consultative group members, 9 women and 1 man.

Since the 2019 assembly, I have spoken out against the use of the terms “carer” and “care work” to describe parenting. I have advocated they use “Mother/Father/Parent” and “parenting” or “housework” respectively, but to no avail. On January 6th, the #CareAboutEquality campaign was launched by IHREC, still using the term “care work” to describe parenting and related work such as housework. This terminology diminishes the issues that so many of us have fought for as family carers of a disabled and/or incapacitated family member.

My primary contention with their campaign is the false equivalency between caring and parenting. Being a family carer of a disabled and/or incapacitated loved one is NOT the same thing as being a parent or parenting.

To help explain my position, I’ll describe my personal experience on it:

I was a carer (an unpaid carer) to my profoundly disabled son for nearly 18 years. He passed away 7 months ago, 5 months short of his 18th birthday. The care work I performed was nursing level care, 24/7. That care work was intensive, medically-based and required training, skill and continual learning. It also required I give up my own career. I am a lone parent. I was a lone parent carer. I was also his mother, but again, to be very clear, the work I did for nearly 18 years to keep my son alive was not remotely similar to that of being solely his mother.

I also have another son. I am his mother, his parent, his only parent, but I am not his carer. What I do is mothering or parenting or it is housework, but is not “care work”. Do I ‘care’? Of course I care! But the use of the term “care work” is not, nor should it be, used to describe the typical parenting work I do for my son or in the home.

Are those other issues addressed in the IHREC #CareAboutEquality campaign important? Absolutely! Those aren’t my grievances.

My grievance is that by using the terms “carer” and “care work” to describe typical parenting and household duties, it serves to diminish the voice and advocacy efforts of family carers. Conflating actual caring work with gender pay issues or parenting duties or the division of household work, as I believe this campaign does, muddies the waters for a carer’s unique role.

As an aside, I believe that such an important campaign would benefit from wide-reaching consultation, not just from 10 people. If advocacy bodies don’t seek input from a much larger consultation grouping, it will likely result in a problematic campaign, as I see this one to be. And, if a commission as powerful as IHREC, who again accounts directly to the Oireachtas, is to be given such media coverage and governmental policy impact, I would suggest said commission to not be comprised of 15 hand-picked members.