Imagine if the Government had made real efforts to engage with disabled people

Earlier this year, a rally was held in Dublin city centre. “Scrap the Green Paper” was the mantra by disability activists, carers, allies and politicians in attendance on the day. It was not the first protest on this issue, but there appeared to be a renewed sense of energy and hope among those present on the day. Just before the rally, the care referendum had been defeated, an outcome for which many disabled people and carers had campaigned. There was a growing sentiment that disabled voices were finally being heard.

The paper in question is the Green Paper on Disability Reform – a “discussion document” released by the Department of Social Protection that proposed to reform the welfare system for people with disabilities. It is important to note from the outset that the purpose of a Green Paper is merely to stimulate conversation. It is not binding legislation.

In this instance, the Government had recognised that the current welfare system for people with disabilities was not working. People with disabilities in Ireland are twice as likely to live in poverty as those without disability, while also being less than half as likely to be in employment as their non-disabled peers. With this Green Paper, the Government was taking initiative to propose reform.

However, the paper was considered by many as an offensive document. The proposed changes would have seen recipients categorised by their level of disability, with some recipients obliged to engage with employment services or risk losing their disability supports. It displayed a crude understanding of disability and it also proposed a set of policy changes that would be highly detrimental to the disabled community.

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At the conclusion of the rally, Maryam Madani, an organising member of the Scrap the Green Paper Coalition and the founding chair of Disability Power Ireland, took centre stage. With vibrant energy and glittering eye shadow, she raised a roll of green toilet paper high above her head, initiating a chant: “The Green Paper is toilet paper.”

In the subsequent weeks, the proposed changes were flushed away. Cue celebrations among the disabled community. The Green Paper had been scrapped – the community was not going to allow itself to be subjected to degrading legislation.

[ ‘There are significant concerns’: Plans to change disability welfare benefits scrapped ]

I felt passionately about highlighting the proposed changes and was given a newspaper slot to cover the issue. The feature was, of course, rendered defunct when the Green Paper was scrapped, but the whole process displayed an irony that was difficult not to overlook.

As a person living with a chronic illness, additional work carries significant weight. Such endeavours can easily disrupt my delicate balance and lead to a downturn in my health, as was the case on this occasion. I was out of action for just under a month – missing both a family wedding and important surgery.

What is interesting here, is that during the course of composing the feature, Government spokespeople continuously re-asserted to me the nature of the Green Paper was a “discussion document”. No decisions had been made. It had merely been released to provoke conversation.

What the department didn’t realise – or didn’t acknowledge – was that the contents of the document started the conversation from a place of fear.

In her excellent Substack newsletter, Legless in Dublin, artist and journalist Louise Bruton recently shared her experience of visiting Flour Mill Artists’ Campus in the old Odlum’s factory in Dublin Port to participate in an initiative led by the Arts Council and Grafton Architects. She had been invited as part of a group of disabled artists to share their insight into how the space could be made accessible for artists with disabilities. In this case, disability wasn’t an after-thought, or a reactive measure only brought to the table after a disabled person suffered an adverse event. This was a conversation that included disabled voices from the outset.

For disabled people, it often feels like nothing is achieved without a battle. Every success is hard won. But imagine, in this scenario, the Government had chosen to begin, not with a conversation that evoked fear, but one that elicited hope. Imagine if the Government had made real efforts to engage with disabled people and organisations to produce a document that the community felt understood and respected the nature of disability, not a fear-inducing document that we had to scramble to rework.

How many disabled people, like me, put their health under duress to advocate for their wellbeing in the face of a potentially damaging legislative change?

How many ended up sick in their fight to advocate for positive reform?

And how many, like me, are still paying the price with their health?

We must celebrate the people who tirelessly advocated for the welfare of disabled persons in the face of this Green Paper and commend Government for listening to their concerns by scrapping the paper.

However, a conversation on reforming the welfare system for people with disabilities is still well overdue.

Next time, could we start on a different note?