Comment: Covid-19 must be a wake-up call for our approach to disability

People living with chronic disabilities regularly experience what the rest of the country is only now facing: the idea that crucial care might not be there for them when it is needed

23rd April, 2020
Comment: Covid-19 must be a wake-up call for our approach to disability
Conor Dillon, from Swords in Dublin, protesting against a 2019 decision to cease a training allowance for students with a disability. Picture: Rollingnews.ie

We are familiar with waiting lists in Irish healthcare, but the coronavirus crisis has made us worry about more than simply waiting for treatment. For the first time in living memory, a pandemic has made people everywhere fearful that the health service might not be able to provide the medical care they need at all, or might be forced to deny it to them to save the life of another due to the scarcity of resources.

The impact of this existential threat has been profound. A previously right-leaning Irish government has garnered plaudits for implementing left-wing policies to bolster our neglected health service. The Irish public has risen to the challenge.

Our strong response is motivated, perhaps, by fear of the alternative. We have seen what unfolded in Italy, where doctors were forced to make devastating decisions about who they could afford to try to save, with too little intensive care capacity to go around.

We have not seen that nightmarish scenario in Ireland. The hard truth, however, is that people living with chronic disabilities regularly experience what the rest of the country is only now being confronted with – the idea that crucial healthcare support might not be there for them when it is needed. Some people live this pandemic nightmare every day, but the false distinction between “us” and “them” must now be challenged.

The Covid-19 crisis has made health and healthcare more real to many Irish people. We must ask ourselves what our healthcare system is for and what we are prepared to accept from it in the post-coronavirus world.

Health is not merely the absence of illness. In rehabilitation medicine, we acknowledge that health encompasses “functioning” – essentially, the ability to do the things you care about. “Disability” is the experience of encountering barriers to functioning because of an illness, injury or condition.

As a paediatrician working in disability and rehabilitation alongside a team of nurses and therapists in Temple Street Children‘s Hospital in Dublin, I work with families to determine meaningful goals towards which we strive together. You survived your road traffic accident – now let’s get back to riding your bike or speaking more clearly or taking a shower without a parent supervising.

After decades of more traditional attitudes to disability, this may be challenging for some to consider, but disability is not a label, a category or even a diagnosis. Disability is not something you “have”, but something anyone can experience, even transiently. A medical condition may be disabling for one person, but not for another.

Many people, especially adults, will experience disability due to Covid-19. Being ventilated, or even bed-bound, for an extended period can lead to significant de-conditioning. This could prevent you from doing the shopping, playing football, or having a conversation without getting breathless. This counts as disability too. For most, it will pass.

Most people would rightly consider overcoming this de-conditioning to be part of the process of getting healthy again after leaving hospital. No-one would consider it a complete success if they left an intensive care unit (ICU) but lacked the ability to return to doing the things they love.

How then can we accept less for people who have lived with chronic disabilities before Covid-19 and will continue to do so afterwards? If functioning is integral to health, how can we stand over the current situation where children wait years for “early” intervention, where rehabilitation services for children and adults are threadbare in places, and where the ethical guidance on ICU triage issued by the National Public Health Emergency Team for Covid-19 failed to protect the rights of people with disabilities?

Survival from critical illnesses, injuries and congenital conditions which cause disability is constantly improving, leading to more and more people needing rehabilitation support to do the things they care about and to achieve their goals. As Acquired Brain Injury Ireland recently advocated: “Don’t Save Me Then Leave Me”.

To date the HSE has not supported rehabilitation meaningfully. To meet European averages, Ireland should have 129 adult rehabilitation consultants; the target is 80 if we use Australia as a target. We currently have 11. Even Britain, not a powerhouse for rehabilitation, has almost three times the number of consultants per head of population as we do. These shortages are replicated with regard to therapists, psychologists and other key team members. The situation with rehabilitation for children is, sadly, even worse again.

How many of the young adults currently in nursing homes due to their support needs might have been capable of more independent living if Ireland had been prepared to properly resource rehabilitation and disability services?

Covid-19 must be our wakeup call for how we view health and disability in Ireland. The existential threat it has posed is a once-in-a-generation opportunity to rouse our politicians and public from torpor and affirm that healthcare is for everyone, without distinction. Disability can affect us all, and disability services are everyone’s business. Rehabilitation is not just for people with conditions traditionally put in the “disability” box. Therapy support for people who experience disability is not some optional extra, but rather the bare minimum obligation of the state to enable citizens to participate in their own lives.

People with chronic disabilities have been long-standing victims of “othering” due to outmoded, but still prevalent, attitudes to disability. Coronavirus holds up a mirror to our willing inattention. It would be fitting if we emerged from our cocoon transformed, ready to enact the words of the 1916 Proclamation that we must cherish all the children of the nation equally. It is long overdue.

Dr Irwin Gill is a consultant paediatrician working in disability and rehabilitation in Temple Street Children‘s Hospital in Dublin.

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