A key moment in the recent general election provided a stark example of how ableism and patriarchy work. Like a father turning his back on a child who was expressing their needs with urgency and emotion, the chilling cold shoulder Simon Harris gave to the brave, articulate and distressed young disability worker – Charlotte Fallon – in Cork was a familiar reminder of what it feels like to be on the receiving end of the othering that occurs due to lack of education and support around disability and healthcare in Ireland.
The image left emblazoned in the minds of those watching the moment could not but be one of immense power appearing to attempt to overshadow the vital voice of those who protect the more vulnerable – who are also vulnerable. Later, Harris apologised, saying he regretted not giving Ms Fallon the time she “deserved” to discuss her concerns, but when othering is done by the most powerful in society, as John A Powell would say, “it has a valence”.
A forced position of survival, the reality of having to fight for basic rights from all angles – for adequate disability workers pay, properly constructed footpaths for wheelchair users, public transport that does not discriminate, classroom assistance for children who need support, meaningful personal assistance hours, mental health supports for those with physical and mental illness, for rights and an equal starting point rather than a charity-based lens and a system that reacts only in the most dire of consequences because it is not resourced otherwise, for the right and support to live fully and autonomously with a disability or illness and then for properly resourced palliative care services when is it time to die – is exhausting.
We have yet to see a rights-based disability framework implemented. In 2007, the government made a commitment when they signed the UN Convention on the Rights of Persons with Disabilities (UNCRPD), but it took 11 years of campaign pressure and scandals until they ratified it in 2018. In October the government finally ratified the optional protocol which would give people with disabilities a legal “individual complaints mechanism” in the face of discrimination. This was after the defeat of the care referendum containing ableist language that would have further damaged the rights of those with disabilities. Campaign work and pressure again. And yet in 2022 the Central Statistics Office recorded that 22 per cent of people experienced a long-lasting condition or difficulty to any extent.
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Our next government needs to urgently implement a rights-based model of disability that moves us beyond the Disability Federation of Ireland statistics that two in five people not working with disabilities are at risk of poverty, one in five people live in consistent poverty and in regards to housing, people with disabilities represent the main category of need for 9.5 per cent on social housing waiting lists. Meanwhile, a non-means tested approach to disability allowance and financial support to bridge the gap between poverty and progress would provide, where possible, a pathway.
But equally important is infrastructure, just some of which is mentioned earlier in this piece. Ableism, the violent cold shoulder of it, comes from policies that divide and isolate instead of creating a bridge to an equitable future. It’s in language too, such as how “inspirational” a person with a disability is for living or when an able-bodied actor is cast in the role of someone with a disability.
True equitable support would act like a bridge, preventing the risk of poverty, supporting the reality of ambition and the reality that neither disability nor illness follow a linear path
Wicked, now the most successful adaptation of a musical to movie since Grease in 1978, tells the story of Elphaba, the ‘Wicked Witch of the West’ pre Wizard of Oz. Her sister, Nessarose, is a wheelchair user. Despite the worldwide success of Wicked since its musical debut in 2003, actor Marissa Bode is the first real-life wheelchair user to play the character.
One week after the movie’s debut she shared “something ... really uncomfortable” on TikTok. While “Jokes about Nessa’s actions, her personality” were okay with her, she called out the “aggressive comments and jokes about Nessa’s disability itself ... because disability is not fictional, at the end of the day me, Marissa, is the person that is still disabled.”
In the movie, Elphaba follows Nessarose around on the first day of university because of her father’s wishes. She ignores her sister’s pleas to leave – a plea for autonomy. Arguably, what was meant to be a shot at independent living for Nessarose is thwarted as Elphaba is then invited to join the university, albeit for her own reasons. Obviously, belonging is not just about basic rights, it is more profound than that. It means that those with whom you exist on this Earth see you on equal footing as an independent human being with all the possibilities of life ahead.
Because everyone deserves a chance to fly.
True equitable support would act like a bridge, preventing the risk of poverty, supporting the reality of ambition and the reality that neither disability nor illness follow a linear path. It should come from the intimacy of our familial life through the infrastructures in our schools and into the policies within our country.
Our new government must urgently implement the UNCRPD rights-based disability framework so we can begin to pave a way on to even footing and beyond.