LAST UPDATE | 10 Mar
EVEN THOUGH NOTHING has changed, I woke up this morning feeling relieved and vindicated.
The landslide No vote in the Care referendum – far from being an endorsement of the existing constitutional wording or the sentiment that it implies – was a rejection of the reprehensible ableist alternative on offer.
However, this is not a victory for anyone, the sexist language still stands; carers and people with disabilities are still denied rights-based access for supports.
When I first read the proposed wording, I was shocked by the definition of care being restricted to within the family, and the lack of obligation on the State to provide supports. Surely, I was missing something?
I saw that Family Carers Ireland and the National Women’s Council were supporting it so they must see something I can’t, right? So, I asked them on social media to tell me how this wording would improve my daily life.
No answers were forthcoming – and while I was waiting for answers, other carers joined in and assured me they saw the same problem with the wording.
We began to exchange stories and opinions, I shared a blog post I had written and suddenly we were a voice of protest.
The Yes/No campaign was an authentic, grassroots, progressive group made up of carers, disability activists and the few remaining allies we had left.
While we agreed with the modernisation of our Constitution, we did not agree it should be at the cost of replacing sexism with ableism and ignoring the rights of the people who give and receive care.
This wording reduced people with disabilities to mere recipients of care, non-autonomous burdens to be foisted on families while the State washed its grubby hands promising merely to ‘strive’ to support us.
The fact that carers and people with disabilities had to spend so much time and energy pointing out the ableist intent of Article 42B, just serves to highlight that ableism stubbornly remains an acceptable prejudice.
It’s so baked into our charity model of support that educated Yes advocates in various NGOs didn’t see anything wrong with hailing this wording as ‘a step in the right direction’ – or ‘a nudge forward’.
Would waffle like this be tolerated as an excuse to deny rights to any other minority in the name of so-called progress?
Refusing to engage
The Yes/Yes campaign doubled down, refused to engage with us, turned off comments on social media and ignored countless emails. I expected this kind of behaviour from the Government but not from the NGOs who are my advocates. Where was the opposition?
We powered on, told our stories online, portrayed the soul-crushing grind of caring in Ireland. We engaged people in conversation, they were prepared to hear our voices and change their minds.
This was not always easy; it was yet another referendum campaign demanding that citizens bare the intimate details of their lives to appear equal and thereby worthy of the changes on offer.
Carers are highly skilled healthcare professionals; we are the only group of workers who have no statutory rights. We have no annual leave, we work 24 hours a day, seven days a week. If we are paid at all, we get less than the minimum wage, but only if we can prove we are poor enough to warrant payment.
The force of our resistance to this referendum highlighted the wealth of talent and chorus of powerful voices of carers and people with disabilities who are locked out of civil society, blocked from participating in meaningful work because of means-tested payments. Is our society happy to squander such a rich resource to a charity-based model of support?
My 20 years of caring have been lonely and isolating. I gave up a career I loved, and with that I lost my pension and financial security. Parenting a child with additional care needs in Ireland is something akin to trench warfare.
Twilight Zone of shame and fear
Apart from the physical and emotional drain, the constant indignity of gruelling, petty administrative work required to qualify for every crumb of support is dehumanising.
I hadn’t realised until I engaged with fellow carers, inhabitants of this Twilight Zone of medical card applications and means tests, just how much shame I had internalised over the years.
Shame that I was reduced to exposing all my financial failings to prove myself poor enough to qualify for a measly €248 per week. Shame that my self-employed partner may have inadvertently earned over the weekly limit and that I may have been in receipt of money to which I wasn’t entitled.
Speaking my truth on social media with other carers made me realise this is inbuilt into the system to dehumanise us, to give us just enough to barely survive, to continually make us prove our worth, to exhaust us so we don’t have the energy to complain and remind us how lucky we are to be in receipt of this grace and favour by a paltry increase in the odd Budget.
Much of the last 20 years has also been marked by shame’s companion fear; the existential fear that the next medical setback could kill my son.
The daily grinding fear that with the click of a mouse, some bureaucrat or computer could just say No and extinguish the tiny trickle of support.
Fear that I hadn’t fought hard enough to get early intervention. Fear that because I was exhausted and didn’t write that other email or escalate a complaint up the line my son wouldn’t get speech therapy.
It would be my fault if he lost his ability to eat and remained tube fed for life. Sharing stories with carers has shown me the odds were stacked against me, the State would always win.
This campaign has been exhausting but oh how liberating. I have met some incredible comrades all struggling with the same emotions evoked by the bloody mindedness of the system.
Their solidarity has quelled my fear and restored my broken, battered voice. I pledge to continue to use it to get the rights we are so long overdue.
Ann Brehony lives in Galway and cares for her 20-year-old son Rory who was born without kidneys. She also works part-time as a script editor.
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