Ms Derval McDonagh:

I thank the Cathaoirleach. I am the chief executive officer of Inclusion Ireland. I sincerely thank the committee for inviting us to this session today, and it is an honour to be here in solidarity with Ms Gjecaj and Disabled Women Ireland on the day after International Women's Day.

I am joined by my colleague, Ms Una Coates, who is an advocate and spokesperson for Inclusion Ireland, and I will hand over to Una to share her thoughts on advocacy and self-advocacy in just a moment.

At Inclusion Ireland, one third of our board has a lived experience of intellectual disability. The directors regularly share their experiences around the challenges of self-advocacy and the lack of understanding around the need for training, mentorship and support so that people can advocate for themselves, and also advocate in collective spaces with other disabled people.

The language around advocacy can sometimes be misunderstood. "Self-advocacy" and "self-advocate" are terms that are commonly used within the community of people with an intellectual disability. In 2015 and 2016, Inclusion International undertook a worldwide survey of people with an intellectual disability, and wrote a global report on self-advocacy for inclusion. In this document, it outlines what self-advocacy means. It is about having a voice, even when we cannot speak, being listened to, and taking control of our own lives.

It is about growing our confidence and belief in our abilities. It is about knowing our rights and that we must be included in all parts of community. Self-advocacy is about working together, which is the important point, to make changes in our communities. Progressive stages of self-advocacy are mapped out from personal empowerment and building confidence, through peer support and self-help, towards the more collective approach of advocacy for action.

Currently, Inclusion Ireland and Independent Living Movement Ireland are working together on developing a guide for the participation of disabled people in HSE services. There has been a lot of learning in working together. A working definition for self-advocacy we recently agreed states:

We recognise that disabled people (regardless of impairment) often need additional supports in order to build their capacity and confidence. This work is based on identifying individual issues but also specific supports to participate in group discussions with other disabled people or to participate in representative spaces. Self-advocacy not only refers to disabled people being supported to advocate on issues they face as individuals, but also being facilitated to work collectively with other disabled people. It is our shared belief that at the core of effective participation is disabled people working collectively together.

When we talk about self-advocacy, people often assume we are only speaking about people who use verbal language to communicate. We cannot leave people with higher support needs out of this conversation. Some of the best advocates we have ever met are non-verbal, have high support needs, and can tell you exactly how they are feeling with one gesture or facial expression. Advocacy cannot, therefore, be a solo effort; it is about relationship. Some people with intellectual disabilities may find it challenging to express verbally what they want or need but can express in many other ways, if there are willing partners who take the time to build that relationship and really listen.

Learning to speak up for yourself is the first step in having control over your life. Too often, as we know, people with intellectual disabilities have had no control over their lives, with decisions big and small being made for them by others. We know there are many people with intellectual disabilities throughout the country in situations they did not choose or have any say over. This includes the 2,400 people living in congregated settings, people living in nursing homes and thousands of people living at home with their families, with no hope of moving out into a life and a home of their own. At Inclusion Ireland, when we hear terms like ”under-represented” or “hard to reach”, we challenge that kind of thinking. It is society that has created these conditions. People themselves are not hard to reach. We have created the barriers that exclude, ignore, devalue and overlook people. This exclusion has led to the creation of oppressive systems, such as institutional living.

The proper resourcing of advocacy and developing systems where the voice of the person is prioritised is the only way to unpick the years of segregation and institutional thinking. In the 1980s and 1990s, community development projects began to support women to meet in groups and do personal development and assertiveness training. This groundwork started conversations about women’s rights that were very important in advancing gender equality in Ireland. A similar investment now needs to take place to advance the disability, equality and equity agenda. In line with the UN Convention on the Rights of Persons with Disabilities, UNCRPD, the State needs to invest in capacity-building supports for advocacy and to support the development of disabled people's organisations, DPOs, where disabled people can advocate for changes in policy and practice that will advance these rights in Ireland.

Inclusion Ireland will continue to support people to develop the skills they need to speak up for themselves and to be a part of collective spaces and DPOs. It is only by working together that we will get the systemic change so badly needed. I will now hand over to Ms Coates, who will give her part of our opening statement.