On March 8th we will be asked to vote on a referendum that will insert article 42B into the Irish constitution - the so-called care referendum.
Here is the wording that if the referendum passes, will form part of our constitutional legislation:
“The State recognises that the provision of care, by members of a family to one another by reason of the bonds that exist among them, gives to society a support without which the common good cannot be achieved, and shall strive to support such provision.”
As a carer, when I read those words I understand that, if passed, the constitution will now place all of the responsibility of care on my family and the state will 'strive' to support us. This makes me very uncomfortable for many reasons.
For a start - it denies any rights to the carer or the person for whom they are caring. Although this wording recognises how carers contribute to the common good - there are no rights enshrined here. You'll forgive me if I get sniffy about recognition without rights. Let me put it this way - here's a loose translation in colloquial Hiberno-English - the wording roughly means 'Aren't you all wonderful, you great carers and sure wouldn't we be lost without you and all the great caring you do and if we've a spare few bob in a budget we might throw you the odd crumb'.
Those advocating for a Yes vote are a collection of all my normal advocates - Family Carers Ireland, the National Women's Council and may activists from the Repeal the 8th and Marriage Equality campaigns. None of whom have been able to tell me how this wording will improve my daily life. Family Carers Ireland state that it will 'potentially lead to more substantial and effective support from the state'. I'm not being funny but how are they gleaning that meaning from this wording? And how is potentially leading to more support any good to any poor carer working 24/7 without any access to respite? They will forgive me if I quote my Boy Wonder and ask 'Are you having a giraffe?'.
The Yes campaign is basically saying 'Look we know the wording is a bit duff but sure isn't it a start, a step in the right direction?'. But it's not a start - at best it's a standing still, at worst it's a retrograde step. And excuse me sisters but surely you would all agree that a hierarchy of rights goes against everything that feminism stands for. During the Yes Equality campaign would you have said yes equality to the GBT but the L has to wait but not to worry this is a great first step and trust us we'll fight for you later? You are removing the 'women in the home' clause to replace it with the carer and people with disabilities in the home clause. Do you really not see it? By defining the locus of care as only within the family you are denying me and my son the right to live independently of each other solely because he has a disability. You are not only turning a blind eye to this you are actively campaigning to make it so.
Roderic O'Gorman is asking me to make like a turkey and vote for Christmas and then trust the process. That process i.e. engaging with the HSE and other state bodies to access care and support is, as any carer will tell you, nothing short of harrowing. It involves Olympic-level skills in bare-knuckle bureaucrat boxing, it demands an enormous cognitive load and often results in no support, leaving us exhausted, drained and without a marble to our names.
Those of you who followed my blog back in the day will remember the time I complained about Boy Wonder's lack of access to Speech Therapy and the local Primary Care manager wrote to me to remind me how much my son had already cost her? Or what about the time Enable Ireland employed that speech therapist they knew had been struck off in California because she was considered to be a danger to public safety? Or then there was all those Medical Card applications? Or the time we tried to get an appointment with CAHMS. I could go on and I'm sure many carers could tell you equally mind numbing, soul crushing stories. I'm not special. Suffice it to say that bitter (and boy do I mean bitter) experience has thought me never to trust the process.
Ireland is the only country in the EU that doesn't have a right's-based access to support and services for people with disabilities. We had a huge opportunity with this referendum to meaningfully change the lives of carers and people with disabilities. Instead we've blown it with this patriarchal, patronising, capitalist privatisation of care dressed up in a meaningless word soup of an amendment.
I will be voting NO to article 42b in the vain hope that we can push for better, because carers and amazing warriors like our Boy Wonder deserve better. I would be eternally grateful if you joined me.
