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Tom Clonan: 'Leo knows we get up early in the morning to bathe, toilet & spoonfeed our loved ones'

We need to radically transform the narrative around disability and equality, writes Tom Clonan.

Tom Clonan Security specialist and columnist, TheJournal.ie

THERE IS A silent minority within Irish society whose current situation can only be described as grim.

They are a group of 600,000 which needs to combine with the rest of the country – Irish people with their innate knowledge of what is fair and right – to launch a positive campaign for equality and human rights.

Over a month ago, I took the decision to write an article for TheJournal.ie about my fears as parent and carer to my son Eoghan.

Eoghan is 15 and suffers from a rare neuromuscular disease, Pelizaeus Merzbacher Disease (PMD) and is a wheelchair user.

The article detailed the routine by which myself and Eoghan rise every morning at 6am for some DIY physiotherapy, how I carry Eoghan to his shower and look after his most intimate care needs on a daily basis – 365 days a year.

The article also highlighted the decimation of Eoghan’s meager physiotherapy, occupational and speech therapy services since the financial crisis of 2008. The government’s response in the form of austerity measures has had a devastating and disproportionate impact on people with disabilities – some of the most vulnerable citizens in the Irish Republic.

The numbers

There are about 600,000 Irish citizens living with a disability along with around 250,000 carers – most of whom are women. This is an invisible community, living for the most part in silent suffering as they cope with the day-to-day struggles and poverty that generally accompanies disability in Ireland.

According to the Disability Federation of Ireland, 34.8% of disabled persons here are at risk of poverty compared to just 16.9% of the general population. Similarly, the deprivation rate among the disabled in Ireland stands at a staggering 53.2%. More than twice the rate among the general population.

Currently, there are over 7,600 persons with disabilities on social housing waiting lists around the country. Shockingly, a growing number of disabled persons are now becoming homeless – including children with disabilities living in emergency accommodation.

It is hard for this community to organise, protest and lobby for change. I’m highly fortunate that, as a carer and parent of a seriously ill child, I am in the privileged position to be able to speak out on the appalling circumstances confronting families like mine.

Disturbed and scared

I cannot emphasise enough however that in this instance, as a parent and carer, my principal motivation for writing this article was fear. I try not to think about what will happen to Eoghan when I die. However, in August of this year it was revealed that there are over 2000 citizens with disabilities who have been placed in nursing homes – in many cases, following the death of elderly parents and carers.

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This fact about Irish society is profoundly disturbing.

When I think about this, in the context of my own son, who is blossoming into a beautiful young man, my blood runs cold. I should not have to consider the future for Eoghan with fear.

The response to the article was overwhelmingly positive, which shows me that there is an innate decency and an urgent sense of moral justice within Irish people with regard to disability issues.

What next?

I also believe that this enormous groundswell of support can be harnessed to effect positive change and action within Leinster House on this crucial equality issue.

At last count, the article was read 40,000 times. It also trended on Twitter in the days that followed. Taoiseach Leo Varadkar and Minister for Health Simon Harris were tagged and directly addressed by way of their own personal digital accounts by thousands of people.

I did an in-depth interview on the Ray D’Arcy Show on RTE Radio 1 the following Monday where I again highlighted the fears that I have for Eoghan’s future care. I also raised the plight of the thousands of other families in Ireland who share similar fears for children and young adults in similar circumstances.

I called for a radical, rights-based ‘Yes Equality’ campaign for our brothers and sisters who are casually and brutally discriminated against by the Irish State on the basis of physical and intellectual difference.

Despite this widespread national coverage (between live, podcast and playback, over 400,000 people heard the show), and the enormously positive response I have received from ordinary Irish citizens, I have received no contact whatsoever from Taoiseach Leo Varadkar or anybody in his department in relation to the issues I have raised. Nor have I been contacted by Minister for Health Simon Harris.

Reassuringly, however, and in a development that leads me to strongly believe that we can get political traction on this important equality issue – many Irish politicians did respond to our cry for help.

Political support

In the days immediately following the publication of the article, I was approached directly by Fianna Fáil to organise a meeting to discuss my concerns. I was also contacted by the Green Party. I was approached directly by joint leader of the Social Democrats, Catherine Murphy. I was approached directly by Gerry Adams, President of Sinn Féin with a view to meeting up to discuss my concerns. I was also contacted by Richard Boyd Barrett and members of Solidarity/People Before Profit in my own constituency of Dun Laoghaire Rathdown.

I am conscious that every TD in Dáil Éireann is related to or knows of someone with a disability. My hope is that through meeting various politicians, we can generate a cross-party approach to resolving this critical equality crisis as it impacts on our most vulnerable citizens.

I believe the Taoiseach is genuinely committed to compelling equality and human rights. I was very moved and very proud of his decision to attend Belfast’s Pride event last month – in which for the first time, LGBTI members of An Garda Síochána and the PSNI marched in full uniform alongside one another.

Yes We Can

I would call on Varadkar to support us in a radical Yes Equality campaign for our most vulnerable citizens – our brothers and sisters with disabilities. This campaign would aim to effect immediate and meaningful change within one of the last bastions of structured inequality, discrimination and human suffering within Irish society.

It would be a wonderful moment for our society if he were to take action now to support families like ours. After all, Leo knows only too well that we are the people who ‘get up early in the morning’ to bathe, toilet and spoonfeed our loved ones.

As a starting point, I would ask the public to support us in calling for the government to immediately ratify the UN Convention on the Rights of People with Disabilities and to support a rights-based Yes Equality campaign for our disabled brothers and sisters.

We need to radically transform the narrative around disability and equality.

Come on Ireland, to paraphrase Obama, ‘We can do it. Is Feidir Linn.’

Dr Tom Clonan is a former Captain in the Irish armed forces. He is a security analyst and academic, lecturing in the School of Media in DIT. You can follow him on Twitter here.   

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About the author:

Tom Clonan  / Security specialist and columnist, TheJournal.ie

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