A culture that labels those with disabilities as 'severe' or 'profound' is inhuman

Underfunded services are not the only problem. Worse is a culture that labels people as ‘severe’ or ‘profound’, or something similarly dehumanising, says Paddy Connolly.

IN the aftermath of the acquittal of Dr Bernadette Scully (she was charged with the manslaughter of her disabled daughter), media coverage focused on the absence of support for carers; on the lack of respite; and on the “burden” of care and the need for in-home supports.

Missing from these discussions is the voice of the person who has a disability, or a reference to their rights, or their agency. Fergus Finlay, of Barnardos, said, after the Scully case, that children with a disability are treated as if they are second-class citizens.

Of this there is no doubt, and it follows them into adulthood. It is problematic to define people by their impairment. Describing a person as “severe” or “profound” or “autistic” disappears the person, denies their human dignity, and portrays them as “a burden” to society and to their “heroic carers”.

It might seem natural to focus on the medical and care needs of the person with the disability; on the “burden” of the family, and on the perceived vulnerability of both. To decry the absence of HSE-funded services is the obvious, but limited, conclusion. Disability services are rooted in institutional practices.

People who have a disability endure the hangover of a charitable model of care which pours hundreds of millions of euro into largely unaccountable service providers.

Numerous reports and research documents by Hiqa, the HSE, academics, and government have exposed the threadbare quality-of-life outcomes, for people who have disabilities, from the €1.5bn spent on disability services.

But the greatest threat to the wellbeing of people who have disabilities is their invisibility, the language of burden, vulnerability, heroic carers, charity, and compassion that renders them non-agents of their own fate, passive recipients of care rather than rights-holders. Disabled people are not a homogenous group. They are men, women, children, and older people. They are gay, lesbian, and transgender. They are ethnic minorities, and of all races and creeds.

As a consequence of this intersectionality, many disabled people experience discrimination on multiple grounds. As a disabled woman, you are twice as likely to experience sexual violence as a non-disabled woman.

If you are a mother who has an intellectual disability, your child has probably been taken into care before any attempt has been made to provide you with the tools to parent. As a disabled victim of a crime, you face significantly more barriers to accessing justice.

You could be one of the 3,000 disabled people who live in large institutions, segregated from mainstream society. You might live in a residential centre that is not compliant with basic standards of care and have little choice over where, and with whom, you live.

Because of decades of inertia in law reform and policy development, our structures, services, and supports for people with disabilities are not responsive to individual needs. In the absence of a rights-based approach to commissioning and delivering disability services and supports, we will continue to fail people who have disabilities.

Meeting the support needs of carers should flow from the State’s commitment to the rights of children and adults who have a disability. Services and supports should be based on the needs, and the expressed will and preference, of the person with a disability.

In most cases, where a person has a complex disability and an inability to verbalise their needs, their family is their primary advocate. And they, too, have been disenfranchised.

What is absent are whole-of-family planning over the life course, personal budgets that allow choice for people who have disabilities, and true reform of an outdated system. Reform is constantly promised, but grudgingly delivered. Few politicians (and no government of recent years) have shown any appetite for real reform.

In 2016, Ireland failed, yet again, to ratify the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

When questioned about being the only EU state not to have ratified the UNCRPD, Disabilities Minister Finian McGrath said ”in terms of quality of service and actual position of persons with disabilities in society, Ireland is, in many respects, in advance of other EU states”.

This statement is grossly misinformed and perhaps reflects the advice of a disinterested and disconnected civil service. Within Europe, Ireland is one of the worst countries for the impoverishment and social exclusion of people who have a disability. A recently-published independent report by the European Institute for Gender Equality (EIGE), an autonomous body of the European Union, states that 50% of women and 55% of men who have disabilities are at risk of poverty or social exclusion, compared to 15% for the general population. This is significantly higher than the EU-28 average.

The Government’s own report, reviewing disability services, and published in 2012, stated that there was little evidence of positive outcomes, or value-for-money, from disability spend; and that services were largely segregated, institutionalised, and offered little choice or control to people who have disabilities and little by way of a meaningful life.

The National Disability Strategy, led by the Department of Justice, and for which the minister is responsible, is abject, failing to comprehensively deliver on a single area of policy or legislative reform. The infrastructure to monitor and oversee the strategy, the National Disability Strategy Implementation Group (NDSIG), from which I recently resigned, is little more than a bureaucratic echo chamber.

In the four years I attended, we spent our time in circular conversations about why government departments had not set up their internal structures to deliver the strategy, and about the failure of senior ministers across government to commit to disability issues.

There are three main, legislative strands to the National Disability Strategy, which emerged after the publication of A Strategy for Equality, in 1996. None have been fully implemented:

• The Education of Persons with Special Educational Needs (EPSEN) Act, 2004;
• The Citizens Information Act, 2007;
• The Disability Act, 2005.

None of these has been fully commenced.

People with disabilities need enforceable rights and to be recognised as rights-holders. We may achieve this sooner if we watch our language and put the rights of the person at the centre; supports for carers flow from recognising the human dignity of each person and vindicating the human rights of people with disabilities.

Paddy Connolly is CEO of Inclusion Ireland