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Taoiseach Leo Varadkar on The Six O'Clock Show on Virgin Media One
VOICES

Opinion The care referendum is problematic, paternalistic and downright irresponsible

Dr Orla Tinsley on why she will be voting No in the care referendum on Friday.

THIRTY FOUR YEARS ago civil rights advocate and Columbia professor Kimberlé Crenshaw coined the term “intersectionality’. The term rocketed into the mainstream when in 2012 the hit tv show Girls got called out for its whiteness. The cast of characters did not reflect the diverse reality of New York City or indeed, real life and in response the show attempted to make amends by including more black and brown characters.

Whereas it may previously have been known only by ardent academics, the term ‘intersectionality’ became, in that moment, part of our culture. Crenshaw, in an interview with Columbia Law School, defined intersectionality as “a lens through which you can see where power comes and collides, where it interlocks and intersects. It’s not simply that there’s a race problem here, a gender problem here, and a class or LBGTQ problem there. Many times that framework erases what happens to people who are subject to all of these things.”

Intersectionality offers a perspective on the problematic approach and outcomes that occur when we choose to see from only our own vantage point and fail to include the multifaceted realities of those who may not share our privilege. When we fail to see how layers of different inequalities intersect and discriminate, everyone loses.

This is why the Care Referendum is so jarring; many mainstream activists in Ireland have chosen to campaign against autonomy and rights for people with disabilities by advocating for a Yes in this problematic, paternalistic and downright irresponsible referendum.

The government did not listen on the wording for this referendum 

Intersectionality means leaving no one behind. It means not settling for being sold a simplistic view of the current situation. This did not happen in the marriage or abortion referendums and it should certainly not be happening now when the lives of some of Ireland’s most vulnerable citizens are on the line.

Though I am not surprised – as a disabled person I am used to people who should know better presenting with ableist attitudes, but nevertheless in a moment like this the ignorance is particularly crushing.

A Yes vote in the Care Referendum resists the acknowledgement of the autonomy of people with disabilities. It is the outcome of a society that has such inbuilt ableism that it cannot imagine how voting Yes in Friday’s Care Referendum is a vote against their very own lives. At some point, each citizen will face some kind of disability or a family member will be in need of support and it is much easier for the government to eschew any kind of responsibility if this amendment passes.

The government could have listened to the Citizens Assembly’s advice on wording when in December 2022, the Oireachtas Joint Committee on Gender Equality ratified the Citizens’ Assembly recommendation, advising the Government to hold a referendum to replace Article 41.2. The suggested wording read:

The state recognises that care within and outside the home and Family gives to the State a support without which the common good cannot be achieved. The State shall, therefore, take reasonable measures to support care within and outside the home and Family. 

The government chose not to listen to this advice. What a difference it would have made.

But listening would have meant having to deal with debate about the already dismal and deadly lack of care people with disabilities (PWD) deal with on a daily basis instead of further disenfranchising them by essentially saying that despite the multifaceted campaigning by PWD and their families over decades, we should accept this dehumanising backwards step.

The words chosen infer the State can try to help, maybe, but there is no obligation there and clearly no effort required. “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,” it says. The idea that we should just accept this wording because it’s the best we currently have is detrimental to the lives of people with disabilities and harmful to the future of our country.

It places the responsibility of care with the family which is the place abuse is most likely to occur for PWD. It rewinds decades of work by disability activists advocating for choice and support for PWD and removes any responsibility of the State. It enshrines in our constitution that the State does not value the lives of PWD.

A huge number of disabled people are fighting for their rights in Ireland 

The current proposed amendment presents disability as something the government has no real life experience of but this cannot actually be the case: disability activists and representatives have provided guidance through the Citizens’ Assembly and decades of activism. The deliberate disregard of this guidance is deeply concerning and it does not bode well for any citizen.

According to the Census in April 2022, more than 1.1 million people (22% of the population) experience at least one long-lasting condition or difficulty. This includes more than 400,000 people (8% of the population) with at least one long-lasting condition or difficulty to a great extent. And yet the fight for disability rights is ongoing and exhausting and can be seen all across Irish society.

The examples are everywhere. According to the National Disability Authority, 29 buildings servicing 43 polling stations were not accessible to wheelchair users during the 2020 General Election. The limited number of wheelchair taxis available in the country makes going places spontaneously – or indeed at all – unjustly difficult for wheelchair users. A Special Education Training hours reduction has caused deep concern in education. Children with scoliosis wait years in agony for a life-changing surgery. It takes at least three months or more for people with disabilities who need a personal assistant to receive home care.

The ongoing lack of hours provided means PWD are prevented from living full lives with self-determination and some are confined to their homes. This affects the right to independence and access to education. Our cities are designed without attention to the needs of people with disabilities making it almost impossible to travel and creating exclusion and isolation. Children with Autism cannot access basic support they need to access education and development. The list goes on.

A critical problem Ireland has is how charity is seen as a legitimate substitute over fundamental human rights for people with disabilities and so often the administration of that charity has been overseen by problematic unregulated religious bodies where institutionalization and human rights violations were commonplace. Abuse is more frequent towards women with disabilities and comes mostly from family members and caregivers. As of 2023, there was only one accessible domestic, sexual and gender based violence refuge available in Dublin.

The lack of progress in Ireland 

And yet the Care Referendum is enshrining the probability of that abuse by absolving the state from any responsibility to prevent it while also paternalistically telling PWD where they should exist. Carers deserve rights and recognition but this referendum will not give it to them. According to the CSO, between 2016 and 2022 the number of people providing unpaid care increased over 50%. In 2022, 61% (181,592) were female and 39% (117,536) were male. They deserve rights and yet they are being sold a lie with this referendum. What a yes vote will do is, remarkably, remove the state’s responsibility for people with disabilities and any impetus to improve their current neglect of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD)

Although the Irish government did sign the UNCRPD in 2007, it took over a decade of campaign work, pressure and endless scandals involving the neglect and abuse of people with disabilities, until they finally ratified it in 2018. Removing sexist language and replacing it with non-rights based language purporting to bolster carers while at the same time not providing them with any additional rights and infantilising those for whom they care is shameful. One would have to wonder why the government did this?

But this is a government that has still not ratified the Optional Protocol to UNCRPD which would give people a mechanism through which to challenge the failure of provisions across every part of Irish society. States Parties who ratify the Optional Protocol agree to recognise the Committee on the Rights of Persons with Disabilities to consider complaints from individuals or groups who claim their rights have been violated. In Ireland, we do not have this recourse.

Leo Varadkar’s comments about care on The Six O’Clock Show 

The Taoiseach’s remarks last Friday regarding the Care Referendum further illustrate the lack of responsibility the government feels they have towards people with disabilities and the lack of understanding of how desperately bad the concept of care in this country is.

In a televised interview on Virgin Media One the Taoiseach remarked the State would intervene “if somebody doesn’t have a family to look after them or if they need you know particular very high care needs” He went on to say, “My experience of life – and I’m sure it’s most people’s experience of life.. my parents brought me up and cared for me.. When they’re old I’m going to make sure they are looked after, God forbid something happened to either of my sisters. I’ll make sure my nieces and nephews have a home and education. I don’t actually think that’s the State’s responsibility to be honest. I think it’s very much a family responsibility,” he said.

This comment may be true for him but it wrongly assumes so much about the rest of us without much understanding. This is not necessarily the Taoiseach’s fault – this is how ableism works unless we have done the work to dismantle it within ourselves. It assumes we all come from a safe and non-violent family home. It assumes we are all invited to return there. It assumes wealth and therefore space to support a family member with disabilities exists in the home.

It is so privileged as to remove the right of choice for the person who has the disability in deciding the space for them is with family. In this frame there is no fundamental right to elsewhere unless there are ” high care needs”. It does not address the reality that people with disabilities experience a much higher instance of abuse, both physical and psychological, mostly inflicted by family members and caregivers. 

In his Letter From Birmingham Jail, Martin Luther King Jr. wrote “Justice too long delayed is justice denied”. We cannot allow this referendum to derail years of disability justice work and enshrine a backwards thinking harmful beyond measure language. The word “strive” is so ambiguous as to be frankly farcical in suggestion. We are better than this.

I will be voting No in the Care Referendum in honor of people with disabilities who are counting on you to see them, hear them and care and demand better.

Dr Orla Tinsley is an award-winning activist, author, teacher and speaker. 

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