Derval McDonagh: Pattern of outrage at abuse revelations is familiar but we need real change

A radical conversation and a movement for change based on human rights principles if we never want to hear a story of the abuse of people with intellectual disabilities again.

The last few months have been particularly difficult for people with intellectual disabilities and their families with the stories of abuse and the 'Grace' and 'Brandon' reports surfacing again. There is a pattern familiar to those of us who work within advocacy; outrage at the stories of abuse followed by silence, in a cycle that can be disheartening and troubling. How many more stories will we hear before real action is taken?

In the narrative, it is rare to hear mention of a person’s human rights and how they are infringed upon by having to continue to live in an environment where they experience ongoing abuse. Instead, we mainly hear about the need for reinforcing policy and better accountability by staff and management. The system, in effect, is speaking to itself. Someone asked me recently if I felt that there was an urgent need for reform in how we support people with intellectual disabilities. 

Reform is a word I view with a healthy dose of cynicism. It suggests tweaking policy and papering over the cracks rather than dealing with the root causes and systemic issues. 

What is needed is a more radical conversation and a movement for change based on human rights principles if we never want to hear a story of the abuse of people with intellectual disabilities again.

A consistent response to reports of abuse has been a call for Government to enact safeguarding legislation and Inclusion Ireland, the national association for people with an intellectual disability fully supports those calls. Legislation will never be enough unless we are willing to face our history and reckon with the ways in which we have treated people with intellectual disabilities in Ireland. We have a long, sad history of segregation, and people with intellectual disabilities are a part of that story. In the last century, institutional living was the norm, this legacy lives on today with almost 3,000 people still living in group homes and 1,300 people with disabilities under the age of 65 living in nursing homes.

We have ratified the United Nations Convention on the Rights of People with Disabilities and we are awash with solid government policy around community living for disabled people. 

Yet the cycle of segregation continues. We close one institution, and we open another; we reform and tweak, whilst developing new ways of segregating people through institutional living for older people in a rapidly growing network of nursing homes.

Reform, outrage, silence.

Stating that some people with intellectual disabilities now live in smaller community-based homes doesn’t cut it if the fundamental ways in which people are supported within those homes never changes. The risk is that we end up with a web of mini-institutions where the thinking around support hasn’t changed, just the size of the building. The way to differentiate an institution from a home is to ask some pretty straightforward questions. Does everyone who lives in this house have a real choice about living here? Did everyone get to choose who else lives here? Does everyone have control over who comes into the house, including whether paid staff, family, and friends can come and go? Does everyone have full choice, control, and freedom over how they choose to live their life? If the answer to all of these questions is a “yes” then the risk of abuse is likely to be low. If the answer to many of those questions is “no” then the risk of abuse is much higher. People who have had their autonomy taken away, who have lost choice and control over their lives, are much more likely to be abused. Unless we turn institutions into real homes, abuse will continue.

Many people with intellectual disabilities need support to live a good life; there is no shame in that. Some people need intensive levels of support, others need a small amount of support. It is the nature of the support which makes the real difference for the person on a human level. Good support is about valuing a person and asking “would I accept this situation for me?“ 

Good support involves aligning ourselves with the person rather than the institution and figuring out a way forward by listening intently. This year, the people we work with at Inclusion Ireland will start to tell some of their own stories. Stories of what is possible when people are valued and seen as rights holders rather than “receivers” of services. Stories of moving out of institutions and living an ordinary life. Our advocacy work will not stop until those stories become the everyday normal experience for people with intellectual disabilities, and the stories of abuse and institutionalisation are a part of our sorry past. 

We will not accept the silence; the stories will be loud enough for all of us to hear.

Derval McDonagh is CEO of Inclusion Ireland