Oireachtas Joint and Select Committees
Thursday, 9 March 2023
Joint Oireachtas Committee on Disability Matters
Self-advocacy and Women with Disabilities: Discussion
Michael Moynihan (Cork North West, Fianna Fail)
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Apologies have been received from Senator Clonan. The purpose of the meeting is to discuss self-advocacy and women with disabilities to mark UN International Women's Day. On behalf of the committee, I extend a warm welcome to the witnesses from Inclusion Ireland: Ms Derval McDonagh, chief executive officer; and Ms Una Coates, spokesperson and chairperson of the self-advocacy committee of Inclusion Ireland. Joining us remotely from Disabled Women Ireland, DWI, are Ms Eliona Gjecaj, disability activist and researcher, Ms Amy Hassett, co-director, Nem Kearns, co-director, and Ms Sarah McNabb, steering group member and campaigns lead.
Before we begin the meeting, I will go through some housekeeping matters. Witnesses are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any person or entity in such a way as to make him or her identifiable or otherwise engage in speech that may be regarded as damaging to the good name of a person or entity. Therefore, if I believe their statements are potentially defamatory and they are asked to discontinue their remarks, they should do so immediately.
Members are reminded of the long-standing parliamentary practice that they should not comment on, criticise or make charges against any persons outside the Houses or an official by name or in such a way as to make him or her identifiable. Members joining the meeting online may only contribute to the public meeting if they are within the confines of the Leinster House complex.
I invite the witnesses from DWI to make their opening statement.
Ms Sarah McNabb:
We welcome the opportunity to participate in the discussion on transition from advocacy to self-advocacy.
Self-advocacy is a broad term, encompassing individuals and disabled people's organisations, DPOs, advocating for the rights of the disabled community, or the personal advocacy needed to secure individual supports and access. It is of crucial importance that any disabled person who wishes to engage in self-advocacy is empowered to do so, but it is equally important that this is a choice and not an obligation. Advocacy is a skill which takes time and energy to exercise. Of late, we have encountered institutions and systems which prioritise teaching people to self-advocate to overcome the obstacles embedded in the system over the decision-makers using their power to remove these obstacles. This places the burden in regard to access on each disabled person's shoulders and does nothing to improve conditions for those coming after them.
Equal opportunity for self-advocacy must be fully and actively expanded to all, including to those living in congregated settings, non-speakers, and those who require decision-making supports. Personal advocacy requires information about individual options and rights, accessible and flexible systems to realise personal choices, support to express individual preferences, and freedom from negative consequences.
Community or human rights advocacy is best realised through empowering disabled people to build their own representative organisations, such as DPOs and campaigning groups. While individual advocates can bring exceptional expertise to the conversation, individual advocacy cannot replace collective representation in influencing structural change. Disabled women, girls and other gender minorities need specific representation in order to meaningfully advocate on the issues impacting our lives, as do ethnic minorities and children. The United Nations Convention on the Rights of Persons with Disabilities, UNCRPD, general comment 7 specifies an additional obligation to prioritise and capacity-build these groups.
In order for gender-representative DPOs to do our work, we need access to information on gendered differences and inequalities. We also need access to the skills necessary for work on policy development, campaigning, outreach, administration and awareness-raising. Most importantly, we need resources to consult with, mentor and empower our members so that we can ensure that all disabled women are represented and reflected in our work.
It is time for the State to put its money where its mouth is, and meet its financial obligations under general comment 7. We must also recognise the numerous other barriers that exist to self-advocacy, including limited energy, caring resources, financial barriers, etc.
There is huge pressure on disabled advocates to be the positive face of disability, to greet prejudice with polite grace and patience, or risk being labelled unreasonable. We hope that today’s meeting offers the opportunity to discuss some of these concepts in greater depth, so that we can begin to create the systems and supports necessary to allow disabled people to engage in self-advocacy, either individually or through DPOs, and the support needed to enable and support DPOs to perform their functions under UNCRPD.
Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms McNabb for her opening statement, and I ask Ms Eliona Gjecaj to give her opening remarks.
Ms Eliona Gjecaj:
I would like to start by thanking the committee for having me here today. I am a disability activist from Galway. I am a Caucasian woman, have black hair, and I am wearing a multicoloured top.
Self-advocacy for me started when I acquired my visual impairment, and has continued to this day in different aspects of my life such as education, support services, and participation with local, national and international NGOs. For example, during my undergraduate degree, I co-founded and set up a student society called Inclusion and Participation to Access Community Transformation and Engagement, IMPACTE. This was a society for students with disability. It was a space for self-advocacy as individuals and as a collective. This led to participation of members in a more accessible student life, support for one another, and transformative actions such as a student referendum to establish a disability officer position within the students union of NUI Galway, among other actions.
My point here is not to list what IMPACTE and I have achieved, but rather to highlight that self-advocacy leads to participation, and participation leads to self-advocacy. Self-advocacy, whether as an individual or as part of a collective, is our voice as citizens, as subjects of human rights, as customers and consumers. Participation on the other hand is inclusion, not integration. It is a general obligation of the UNCRPD that states enable, ensure, and provide accessible platforms for us as disabled people, and as disabled women, to have our self-advocacy and our voice heard, listened to, and transformed into actions, and inclusive practices, policies and laws.
Every article of the UNCRPD is interlinked with another, and when we combine self-advocacy and participation, we are to apply that to every article within the UNCRPD, and within every aspect of our lives as disabled people and disabled women. For example, we are to apply that to education, health, support services, family life, equality before the law, access to justice, freedom from violence, exploitation and abuse and so on.
In light of International Women’s Day, I would like to celebrate all the disabled women of Ireland who have come forward, disclosed, spoken up and spoken about gender-based violence against us. Violence does not discriminate, and as research shows, disabled women are at higher risk of experiencing violence compared to non-disabled women. Violence is not taboo, and thus we must continue to self-advocate, so that together we can walk the justice walk, and as a society we can build an inclusive future, free from violence. I thank the committee.
Michael Moynihan (Cork North West, Fianna Fail)
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I thank Ms Gjecaj. I now call on Ms Derval McDonagh and Ms Una Coates to make their opening remarks.
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.
Ms Una Coates:
I am the chairperson of Inclusion Ireland’s self-advocacy committee. I am proud to be here as a woman with an intellectual disability to speak up and use my voice.
Ireland ratified the UNCRPD in 2018. Article 4.3 of the convention mentions making sure people with disabilities are involved in decisions that are important to them, including laws and policies. I did a course on self-advocacy in 2018. It was the start of my journey in speaking up for myself. Advocacy is when other people speak on behalf of a group. Self-advocacy is when people speak up for themselves about what is important. It is powerful to hear people tell their own stories. Only people with intellectual disabilities can tell you what it is like to have their experiences in life. As a committee, we organise events, we do focus groups to hear what people have to say, and we help to make information easy to read. We take part, when the Government and other organisations ask, on what we think. Our committee has both men and women. We are all the same.
To make informed decisions, we need information presented in a way we understand. We need more easy-to-read information and videos. We need decision-makers to understand that we all communicate in different ways. People can have their voices heard. Even if they do not speak, they can use technology or have a communication partner to get their message across. I am lucky I can speak. I will speak for others. We are all equal no matter how much support we need. We all have the same rights.
Michael Moynihan (Cork North West, Fianna Fail)
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I thank the representatives for their opening remarks. I will go to members. I ask them to identify the person or persons they wish to answer their questions at the very start, and to direct questions to specific witnesses.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Good morning to all our witnesses. I wish them a belated happy International Women's Day. I will put my first question to Ms Coates. What supports did she find useful in helping her to become a self-advocate?
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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I have a similar question for Ms Gjecaj. What supports did she find useful on her journey to being a self-advocate that helped her, such as in education and so forth?
Ms Eliona Gjecaj:
I learned the hard way. As I said, acquiring a visual impairment was a new journey in my life. I had to learn to speak for myself to come to terms with what my visual impairment required for my life to succeed. It was learn as you go and, of course, collaborating with different NGOs, be they local, national or international, as I said. I learned from other advocates and companions of mine how to advocate, whether it was for people like me with acquired visual impairment, or who were simply visually impaired, and other groups of people with different disabilities. I learned through that. The more you engage in education, the more you learn. I have a master's in disability law so that helped me a lot.
Pauline Tully (Cavan-Monaghan, Sinn Fein)
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Okay, very good. Do the Disabled Women Ireland representatives or Ms McDonagh still find it difficult to be included in consultation with certain Departments and local authorities or other organisations? Do they sometimes find those bodies are set in their ways in that they have always consulted with certain organisations over the years, which may not be DPOs, and believe that is sufficient? Is it hard to break through? What supports should DPOs, such as those represented today, or new DPOs being established, have? I know financial supports are needed but are there any other supports? I ask them to elaborate on that.
Ms Amy Hassett:
There were two questions. Is it still difficult to be included in consultation? The answer, unfortunately, is “Yes”. We are still working in a system that is inaccessible, broadly speaking. Despite the fact that we have recently published guidelines by the National Disability Authority, NDA, and, more importantly, in context of the UNCRPD, we are still finding that consultations are conducted in a way that is inaccessible. It is difficult for us to get information in multiple formats, including easy-to-read and plain English versions. We are finding still that consultations are being held on very short timeframes and often overlap with one another. We have very limited resources in terms of how we can contribute to things. Under the UNCRPD, there is an obligation to consult with DPOs on an ongoing basis. We have yet to see that happen. Instead, we are being lumped in with the general public consultation process, which is inaccessible, not compliant with the UNCRPD and also just does not work very well. It would be good if we could sit down with departmental officials and talk through problems. Often, we are asked to consult on various items of legislation. However, we are disabled people. Some of us have a background in law and policy and some of us do not; I do not. Trying to understand and get through that information in the absence of accessible formats and proper supports is incredibly difficult. That process is not necessarily working very well in our favour as it currently stands.
On what the we need, when we come before this committee, we talk a lot about money. While we have an opportunity, I want to drill down a little into what we want to do. We are not just asking for money for the sake of it. We need money for things such as infrastructure, a website and Zoom accounts, all of which are currently paid for by member donations and people who donate speaking fees to us. We need money to host events. We know that there is a digital divide between disabled people. Some of us find online meetings and online communities inaccessible. We cannot currently meet in person because we do not have the resources to rent accessible places. We do not have money for Irish Sign Language and things like that.
It is also a massive effort for people to be involved in disability advocacy. It is a massive drain on their personal time and energy, which we are not compensating them for. There are many companies out there that consult with various different organisations, Government Departments and so on and so forth that get paid and compensated for their time. However, that does not happen for DPOs. If we could pay stipends or support our members in respect of the work they do for DWI, that would massively increase the accessibility of the work we do.
Setting aside the issue of money for a second, what are the other resources? I am sure Nem will add to this. We need capacity building. What does that mean? I said before that we have to talk about legislation and various different policy documents, which are often very dense and difficult for us to understand, particularly if one does not have a background. We are lucky in that we have a couple of people in DWI and externally with whom we can sit down. We can ask them to explain, for example, the Education for Persons with Special Educational Needs Act if we do not understand what a certain section means, etc. The Government should support us in that. We should be able to go to officials in Departments and ask, for example, for the Education for Persons with Special Educational Needs Act to be explained and we will tell them what is missing from it.
We also need capacity building in terms of how to write an effective policy document and how to write an effective submission on, for example, the Education for Persons with Special Needs Act. What is specifically being looked for and what are the specific things others would like to hear from us? How do we take the experiences of our members and translate that to the systemic part? For those of us who have a bit of experience in policy and advocacy, we know that where the problem is seen in the system is often not where it actually lies; it is about two or three steps removed. As disabled people, we can tell others what we are seeing on the ground. However, we do not have insight on understanding where that comes from in policy or legislation. We need support to be able to provide that insight.
What is good evidence? The other thing we would talk about is data collection. We do not have access to data and we are not being provided with data. Much of the time, it is because it is not accessible or not even collected. How do we construct an argument in a way that people will value what we have to say and accept the weight of that argument? How do we go from that lived experience to those structural problems?
On the structural things the State or Government bodies can do, they can focus on accessibility. It is about focusing on ensuring that the information is given to us in a way that is accessible. As a very recent example, the consultation period for the review of the Education for Persons with Special Needs Act is ongoing. The deadline has been extended until 24 March, but the announcement of that deadline from the State happened after 3 March, which was the original deadline. On 7 March, we were told that the deadline was being extended. We spent massive amounts of resources in trying to get a submission put together before that deadline, only to submit it and then be told we had an extra three weeks. We had to sacrifice doing other pieces of work to do that. We need accessibility in communication on the part of the State.
My final point is that we need ongoing consultation. We need to be able to consult with Departments outside of just a dedicated public consultation period. The last thing we need is to know that what we are doing has impact. We ask our members time and time again to consult, come along to a consultation and chat to us about various different topics. It is very difficult for us to go back to the members and say, “You told us this and this is the policy change that happened as a result of that.” We need that to gather momentum and continue with the momentum we have in the organisation in order that our people know that what they are doing has an impact. The change is slow and it takes a long time, but we need to know that what we are saying is being listened to, heard and it is influencing the policies that are being created.
Nem Kearns:
To address Deputy Tully’s point on whether the consultation is happening across Departments and various bodies, the answer is “No”. The Deputy is correct. There is still an over-reliance on an outlook of “These are the people we have always spoken to, so these are the people we will continue to speak to".
I wish to raise, particularly in light of today’s topic and DWI's work, that we are finding that with large charities and service providers on the disability side but, equally, when it comes issues affecting women and gender minority people, it does not occur to people to talk to disabled people or we are seen as too niche or too small. It is as if since they cannot talk to everybody, they will not talk to disabled women and disabled people. That is a huge issue. We know that there are massive structural issues of inequality for disabled women. In addition, one in four women is disabled. It should not be a numbers game, but we are not a dismissible, niche problem. That attitudinal change needs to both be pushed and to happen. There is an equality gap between disabled men and disabled women and that is only growing. It will continue without active, focused, targeted work on it.
Ms Eliona Gjecaj:
I wish to add two points. Disability does not discriminate. It is me today; it could be you tomorrow. That way, we all have to put our strengths together to build an inclusive and accessible future, whether we are disabled or not.
On consultation, when I have engaged with different organisations or local or national government bodies, sometimes we are included at the very last stage of consultation or there is little window for change or our voice to be included and our highlighted changes be implemented in whatever is being reviewed or changed, such as an environmental change, a law or a policy.
As Nem Kearns said, we need to be included in every way in terms of consultation. For example, when there was a review of the domestic violence Act we needed to be included. We are women too and we are at higher risk of being subjected to violence. That is just one example. In reviews of health policies, we as disabled women and disabled people need to be at every table that is discussing policy change or change in practice. That was my other point. Again, it is in consultation; we are not a tick-box exercise. If we are to be included in discussions, we need to move beyond integration and have our voice included.
Finally, on resources, we disabled people know best what is best for us. Therefore, we are a resource of knowledge when people are changing policies, putting together laws or practices. Therefore our voices need to be included, to be heard and what we say integrated into the changes and not just seen as a tick-box or something that is to be included in the discussion to look good in the public eye.
Ms Derval McDonagh:
I agree wholeheartedly with all of the points that have been made. I have spoken before at this committee on the particular experience of people with intellectual disability and the consultation processes. The consultation processes are often insultingly short for people. That continues to this day despite the efforts of people with intellectual disabilities such as Ms Coates and other colleagues of mine who continually give their feedback in every policy submission that the consultation window is so short. The materials that are provided as part of the consultation are often completely inaccessible, inappropriate and not in formats that are at all suitable for people. That is one thing on the process itself but time and again, we hear about consultation fatigue. Disabled people are absolutely tired of being consulted. It should not be just about consultation. We should be moving way beyond consultation and into real, meaningful participation. The next step of that is co-creation of services and supports. We are still not on the first rung of that ladder. We are not even getting the consultation part of that right yet. That is disappointing to people at this stage.
One example of that is around the budget process every year. DPOs around the country, civil society organisations and NGOs which spend hours, days and weeks putting together really comprehensive budget submissions but on budget day the information given out is completely inaccessible to the average person. It is not disability proofed. No one understands exactly what it will mean for a disabled person on the ground in terms of their lives and the changes to their lives. We would love to see even that process looked at and tackled because ultimately it sets out the targets for the next year and what will be addressed. However, on budget day, it is a mystery to most people around the country what is going to happen with that money.
Finally, on consultation, participation and co-creation, when there is a very segregated government system where Departments do not necessarily speak to one another or communicate among another in ways that are always effective, it is the disabled person who falls between those cracks continually. The national disability inclusion strategy is at the end of the road and there will a new iteration and a consultation process around that for disabled people over the coming months. We feel the new iteration should be called the new UNCRPD action plan and it should sit in the office of An Taoiseach to give it due weight and consideration. In that way, you might get more of that cross-departmental thinking and working because there is no point in talking about a house without talking about the supports to live there or about transport without talking about community. You have to link it all up together. Individual Departments consulting on things is missing out on the big picture around disabled people's lives.
Holly Cairns (Cork South West, Social Democrats)
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I thank everyone for coming before the committee and giving us their time. Today's theme of self-advocacy and women with disabilities is an important consideration for the committee. The Convention on the Rights of Persons with Disabilities is about providing a rights-based approach to disability. This is a two-sided coin because it is about empowering people to understand and exercise their rights but also about increasing Government and State accountability to respect, protect and fulfil rights. I welcome the strong points made in the opening statements that self-advocacy is a complex area and it should not be an additional burden placed on disabled people, especially women. The State needs to put in place structures to facilitate and foster self-advocacy, be that for individuals or DPOs.
My first questions are for Disabled Women Ireland. I was struck when its open statement said that advocacy can place the burden in regard to access on each disabled person's shoulders and it can involve real dangers for the individual advocating. Can Disabled Women Ireland elaborate on those points? Words like "advocacy" and "empowerment" can be too easily employed without fully considering their implications. They also stressed the importance of DPO funding in capacity building which they described as being largely tokenistic and unlikely to affect real change. My understanding of DPOs and their vital function has been transformed by discussions of this committee. I know a lot of work is still to be done by the State in recognising and really promoting the model. What should the State be providing in financial and other supports to be compliant with the Convention on the Rights of Persons with Disabilities as outlined in general comment 7?
I am eager to hear Inclusion Ireland’s comments on what the State needs to do to support the development of DPOs. Its explanation of advocacy as relationship was striking especially in terms of people who might find it challenging to express themselves verbally. Can its representatives discuss the type and scale of work that goes into developing this form of advocacy? Ms Coates spoke about why it is important to have information in a way that can be understood and to design more easy-to-read information and videos to help make informed decisions. Could she tell us why that is important?
Finally, Ms Gjacaj rightly chose to discuss gender-based violence. That is an unfortunate reality. We always have to discuss it on International Women’s Day, or maybe I should say international women’s week as today is the day after. She explained the reality that disabled women are at higher risk of experiencing domestic violence than non-disabled women. Has she suggestions for immediate measures that could be taken to address gender-based violence particularly regarding disabled women?
Ms Eliona Gjecaj:
There are multiple ways. There is a lot of international research, across Europe and across the globe. First and foremost, we need to collect the voices of disabled women. When I say voices, I do not mean only speech but people with different communication skills. We need to hear their stories and learn from them and their experiences because if I share something, then I am sure I will empower someone else across different corners of Ireland to share their experience or to identify with my experience. An immediate action would be to fund research to get across Ireland and collect those stories and experiences, not only in voices of disabled women but also with the experiences of police and current legal justice, although that is not to suggest that is the kind of justice that disabled women want.
We need to combine the voices of disabled women with the experiences of people who support reporting, investigation and prosecution of gender-based violence, whether that be in domestic or congregated settings, in support services or elsewhere.
Article 33 of the CRPD calls for states to collect statistics. We always go on assumed numbers of disabled people in Ireland and across the globe but we need proper statistics. We need recent statistics on disabled people, including disabled women and issues that concern our lives and our inclusion and participation, to inform practices, policies and laws. If the Government is willing to provide the funding, I would be willing to provide that information or to go ahead and do that research together with other women from Disabled Women Ireland, DWI, and other NGOs and DPOs across Ireland.
Ms Amy Hassett:
I will make a number of brief points to add to Ms Gjecaj's comments on gender-based violence. Research and statistics are super important and I would advocate increasing funding and starting to work on those. We recently made a submission to the EU on gender-based violence and how it is experienced by disabled women and pointed out that the support services currently in place for women, non-binary people and anybody experiencing gender-based violence need to be made accessible because they are not currently so. Something that is very structured and could be done in a short period of time would be to conduct an accessibility audit and make resources available to make those support services accessible in the broadest sense of the word. It is not just about not having a step at the front door; it is also about ensuring that people who are neurodivergent are properly supported and that service providers have equality, equity and unconscious bias training so that they can support individuals coming into those centres.
Another really concrete, short-term action is to start working on financial independence for disabled women and non-binary people. We have spoken about this at the committee previously. We talked about issues such as the means testing of disability payments and about how financial dependence is a major risk factor, or how it at least complicates experiences of gender-based violence. We spoke about disabled people being at increased risk of being financially and otherwise dependent on individuals close to them and the barriers that creates for people who want to leave dangerous and abusive situations. In addition to conducting research and collecting statistics, these are areas that we could start working on in the short term.
In terms of the resources needed by DPOs, it is also important to consider the resources needed by new and upcoming DPOs and I will speak to both. I reiterate that financial resources are incredibly important. We need resources to be able to pay people for the time they are spending and to make sure we can create systems that are accessible. We need money for online infrastructure and in-person meetings and to ensure that events of all forms are accessible. We also need capacity building, either by providing resources to DPOs so that they can go out and training elsewhere or by the State providing that training itself. That is something that would probably need to be discussed in greater detail but we need that capacity building. We need to know what we need to write and look at and how we interact with policy and legislation. We need that capacity-building piece. The State needs to ensure that all of its consultation is done in an accessible way. I absolutely agree with Ms McDonagh that we need to start moving towards a co-creation sort of space. Those are the things that are needed.
As regards new and upcoming DPOs, we would always support the creation of more DPOs. There are lots of areas and different intersecting identities that are not currently directly covered by a national DPO . We are in favour of more DPOs forming, to be super clear. As to what is needed, we need greater awareness of what a DPO is and how to create one. If that means individuals who are interested in forming a DPO being given support to get in contact with existing DPOs, we are entirely in favour of that but we need support in order to be able to achieve that. We are already struggling to keep up with the demands that are being placed upon us. Ensuring that support, resources and information are available is important.
Nem Kearns:
I will just briefly add to the points made by Ms Hassett. We seem to be unable to connect the dots. We are talking about disabled women's inequality vis-à-vis educational attainment and access but we do not join the dots in the sense that this means that when we are trying to advocate and form DPOs, we have fewer people who have knowledge of corporate governance and GDPR. We also need access to training in those areas to be fully empowered and fully self-representative and regulating.
Regarding gender-based violence, we have highlighted the fact that the majority of such violence experienced by disabled women, girls and non-binary people is from their caretakers and family members. Currently, there is not sufficient provision in law to capture those relationships. We do not have equal protection under the law. To put the issue of financial dependency in real terms, we are speaking to women who tell us that they cannot wait until they turn 66 so that they can get the State pension and leave a spouse who has been abusing them every day for 40 years. Financial dependency is not an abstract concept. We are talking about people who are entirely dependent on their abuser to eat, get out of bed, access medication and so on. This is urgent. Every day that we continue to link disabled people's rights and their ability to literally survive to the people around them, we are leaving them facing abuse every single day. We cannot keep dragging our heels on this or keep thinking it is quite an abstract, budgetary condition. We need to empower disabled people to be individuals, to stand on their own two feet or roll on their own two wheels. I am very passionate about this. We need to connect those dots and start seeing the reality, not just the academic reading off a page that disabled women experience this and that. No disabled woman who is trapped in a home with abuse is going to be able to advocate at all. We need to give them the tools to escape the situation they are in before we can expect them to advocate, consult or anything else. The onus is on us, not on the most marginalised and vulnerable.
On the burden of access and advocacy on the individual, this is also an issue about which we are quite cautious. Of course, we are advocates and we are fully in favour of empowering everyone to advocacy but we are also absolutely clear that advocacy is hard. It takes a lot of learning and is a skill that needs support, energy and time to exercise. It cannot be demanded of every single disabled person, just because an individual is a disabled person. We are also speaking to people and trying to support our members who encountering obstacle after obstacle. Disabled students at third level, for example, are having to ask every single lecturer and faculty member before every single module of every single course every single year to explain their reasonable accommodations and then request that those be upheld. Let us be honest, at this stage it is still a request.
We do not have robust enough statutory support in this regard. The nominal cost of reasonable accommodation is unclear and is difficult for a disabled individual to demand. What is a nominal fee? How does a disabled person argue with someone refusing accommodation on the grounds that it does not apply? "Nominal" can mean anything apart from "free".
The response we often get from universities is that they are teaching people how to self-advocate. They genuinely mean that, but what they are saying means that they are not going to remove any of the obstacles in the system or move to universal design and they are going to force every single disabled person who attends them to spend his or her time and energy on a large administrative, emotional and psychological burden that non-disabled students do not have to go through to get equal access. The elephant in the room is that ableism exists and is structural and systemic. It is not just one person saying a mean thing to another person, yet this is what we are asking disabled advocates to go up against every time they speak and have to request access. When we are asking people to advocate their way over barriers, we are not removing those barriers, so the next person is going to have to advocate for the same thing as well. As such, this will happen time and again, no progress or systemic change will be made and disabled people will be exhausted.
No disabled person gets to college age without learning how to advocate, but we also have to pick our battles and live with the consequences of our advocacy. When we speak out, not everyone takes that well and there can be retaliation and other negative consequences. There are also risks, which we highlighted in our written submission. In particular, disabled parents who speak out are terrified that they will lose their children. They are not being irrational. Parental capacity is adjudged in a highly ableist way in a highly ableist system. This ties into gender-based violence. We are speaking to disabled women who are staying with abusers because their abusers are using the ableism in the system as a weapon, saying that if the women leave or report them, they will take custody of the children because the women have X diagnosis. We are also speaking to disabled women who have left an abuser and have immediately had their children taken away from them due to a diagnosis. A study in Australia found that more than half of disabled women who reported gender-based violence had their children removed from their custody temporarily or permanently. We need to be able to name these things and to talk about the elephant in the room, that being, ableist bias.
Deputy Cairns referred to the burden of access on the individual. I congratulate her on her recent promotion, although I do not know if that is the right word.
Michael Moynihan (Cork North West, Fianna Fail)
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It probably is.
Nem Kearns:
Along with other female politicians, she spoke recently about the levels of abuse levelled at women in the public eye. It is a real barrier to political participation for women in general. When disabled women are advocating, speaking out or risking being in the public eye, they get sexism and ableism. That public eye might be on the national stage or in their communities, schools or wherever, but let us not be naïve and believe there are no consequences to advocating, for example, being labelled a troublemaker or being excluded for being the squeaky wheel. We need to recognise holistically the real lives that disabled women lead and support them fully in all those respects.
Erin McGreehan (Fianna Fail)
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I thank the witnesses for their time. I wish them all a belated happy International Women's Day. Yesterday, I was feeling a little International Women's Day fatigue because we are constantly waiting for stuff to happen. Here we are again talking about how we are waiting for things to happen.
The witnesses spoke about the importance of self-advocacy. As politicians, we understand its importance. We are advocating, but we are also hearing from people, and we best hear those who are best at self-advocating. This shows the importance of self-advocacy, but it also scares the hell out of me because the people who are not self-advocating are in the worst shape.
Ms Coates referred to the self-advocacy course she took. What difference did it make for her? Would she recommend it for everyone in school right up to an appropriate age? Everyone should be a self-advocate regardless of age or need. Ms Coates is clearly a great advocate for herself and others.
Erin McGreehan (Fianna Fail)
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Did it make a difference in Ms Coates's life?
Erin McGreehan (Fianna Fail)
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And Ms Coates is here at the Oireachtas committee proving that.
Erin McGreehan (Fianna Fail)
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I thank Ms Coates.
Ms Eliona Gjecaj:
I will draw on Nem Kearns's comments. We should not have the burden of advocating for ourselves just because the system does not work. For us to speak out carries consequences, but there is also the potential for improvements in our individual situations. However, it should not be the case that if someone does not self-advocate, he or she is left in a worse condition. The system needs to hear our voice and implement it into changes to at least provide a basic standard of proper living conditions for each of us, be that in Dublin, Galway or any rural or urban area in any corner of Ireland.
Erin McGreehan (Fianna Fail)
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There is self-advocacy fatigue. I know many people who do not speak up in their workplaces. They are well able to do it, but they have retreated because of the backlash over being perceived as awkward when they would only be asking for what was normal and right.
It is clear that there is also consultation fatigue. We all feel it. Judging by the Government's website, there are probably thousands of public consultations ongoing. I might stand to be corrected, but I believe the principles and guidance relating to public consultation were written in 2014. The committee could take up this matter, as 2014 was four years before we ratified the UNCRPD.
Perhaps the committee could ask the Department of Public Expenditure, National Development Plan Delivery and Reform to review those. If public bodies and Departments are using these outdated principles and guidance, the voices of the people we want heard will not be heard. On that note, what infrastructural changes to those public consultations can we advocate for on the witnesses' behalf? Ms Hassett and Nem spoke about building the capacity of DPOs. How would that be built in to public consultations? Should every public consultation have a person available to ensure the voices of DPOs, groups and advocates are heard?
Nem gave part of an answer to my next question in a previous contribution. There are so many flawed policies because the voices that we want to be heard are not heard and because of ableist attitudes and polices. There are blatant and obvious things that are not heard. What are the consequences for disabled women when those voices are not heard and ableist policies and attitudes trump others?
Ms Amy Hassett:
I will speak to all three of the Senator's questions. A lot of policies are flawed and there are a lot of omissions in policies because disabled people are not heard from. The example I gave to the committee the last time I appeared was that our most recent gender-based violence strategy includes no mention of disabled people other than a reference to Disabled Women Ireland being one of the bodies that held a consultation on the strategy. None of our recommendations and no measures relating to disabled women were included in that strategy, which will be in place for the next four or five years. The policies are clearly flawed as a result and the consequences are that the changes we need to ensure Ireland is CRPD compliant will just not happen in the timeframe required. We have to keep waiting for the next strategy and the next policy to start working on them. That is unbelievably frustrating for our organisation and others.
I will make one small point about advocacy to be super clear. Self-advocacy needs to be a support to ensuring an individualised approach for disabled people. Each person who is disabled will have different support needs and will need different reasonable accommodations. Ms Gjecaj spoke about a minimum standard of universal design and providing people with reasonable accommodations. The self-advocacy piece should be that last little bit on top to make sure those supports are tailored specifically to a person's situation. People should not have to be going for the basics. It is about getting that last little tweak to ensure full accessibility and that they are fully enabled to realise their rights under the CRPD across the board. Self-advocacy should be the last little bit of the puzzle.
As for how to bring about more accessible public consultation processes, Disabled Women Ireland is strongly in favour of two things. One is that the idea that the only time DPOs are consulted is as part of the public consultation has to go out the window. It has to disappear. We need to consult DPOs on a more regular basis because it is very difficult for us to get our views across in the format required and within the period of those public consultations. If we could meet the Department officials or the people involved as they are developing the consultation and as they review it on an ongoing basis and if we could bring our members and members of other DPOs in to sit down and have those conversations on a more regular basis, with appropriate reasonable accommodations and compensating disabled people for their time, that would be a much more accessible process. A very quick change, which would be of massive benefit, would be to ensure that, as part of public consultations, someone is given the responsibility to talk and actively consult with DPOs. In recent weeks, we have consulted the Department and asked questions about a consultation but have not had an answer to our emails. Aside from being frustrating, if we are not getting an answer to our emails, it limits our ability to participate in those consultations because we cannot go back to the Department and say, "You are asking this question; what does that mean?" or "You say this on the website; what does that mean?". Even if we just had a line of communication and a person we could speak to who is accessible by phone. We talk about the digital divide and the need to be able to communicate in multiple formats. For some people, picking up the phone is the most accessible way to communicate. For most public consultations, there is not phone number we can call. We have to do it via email and we have to wait until somebody answers, which is often too late. Having a person place could be done within a very short period and would help but as a longer term plan, we need more regular, ongoing consultation.
Nem Kearns:
Yes, I fully support that. What Ms McDonagh said earlier about moving from consultation to participation and co-creation really is the map we should be using. We should be moving to an ongoing conversation. A lot of these issues are complex and nuanced.
In my previous response, I forgot to highlight another issue that is crucially important. In its most recent report, Aligning Disability Services with the United Nations Convention on the Rights of Persons with Disabilities, the committee highlighted certain techniques and therapies used on disabled people, in particular autistic young people. These behavioural intervention techniques are expanding to be used on people with intellectual disabilities and deaf people. These techniques are compliance training and teaching disabled people to accept whatever an outside authority does to them, both physically and mentally, and teaching them learned helplessness, that they have no voice. I want to put on the record that in order to promote self-advocacy and empowerment for disabled people, we need to stop teaching them that their voice does not matter at the youngest age. We need to stop teaching them that compliance is the ultimate goal of their lives. We also need to teach children at a young age that their advocacy matters and their views matter. That goes for all children, not just disabled children. We also need to teach non-disabled children about disability issues because when people become adults and have a lifetime behind them of viewing disabled people as other, niche or strange it is too late.
On consultation, an access officer would definitely be a helpful first step. Ongoing conversation as opposed to discrete consultation is absolutely necessary. We also need support. We need to look at consultation in the home in the round. For example, our members have put their hands in their pockets to the tune of thousands of euro to pay for transport to consultations and access needs for consultations. Again, it is the lack of joined-up thinking about the reality of disabled people's lives. We will talk about how half of disabled people struggle to access public transport and then we want them to go to a consultation in Citywest. There are also the practical issues. For example, if disabled people rely on public transport to get to a consultation, a bus will take only one wheelchair user. How many wheelchair users will be able to turn up? Will they have to start queueing from midnight the night before? We need to support people to get to consultations by providing information and transport.
There is also the removal of hybrid or remote options. This has really impacted disabled people's ability to participate. We learned how to do it. That was one of the good things to come out of recent years. We need to keep that. That is all I want to say. I support what people have already said on it but emphasise we need to be moving to conversations as opposed to isolated one-off consultations every few years.
There is something else I would like to see. What we are seeing, particularly for disabled women, is even more falling through the gaps. I would like to call for strategies on a national level dealing with women's issues or gender-based issues to automatically have to include high-level targets ensuring equality for disabled women.
I would like to see national strategies for disabled people having to include high-level gender-based targets. Almost none of them do. There are entire strategies on women that do not mention disability. There are entire strategies on disability that do not mention women. There is an assumption that will come out in the wash and be worked out in the detail, but it is not. To show our commitment to equality for disabled women, we need to be putting that at the highest level and showing we see it as a high-level priority.
Ms Eliona Gjecaj:
I want add to Nem's point on that. I definitely agree with having an accessibility officer, but I would add that that is not the only answer. By that, I mean we should not just establish a disability officer and forget about the other types of consultation. For me, the word would be "flexibility" and multi-platforms for consultation for participation for self-advocacy. As Nem said, if we could highlight one good outcome of the pandemic, it would be the remote participation. It might suit some people to attend consultation, self-advocacy meetings etc. We need to have multiple options. No one size fits all. No one solution fits all. We need to keep multiple aspects, multiple choice and multiple platforms.
On the last point, I will explain that the term "reasonable accommodation" means individually suited measures or tailored measures to the needs of the individual. It is a complex term also.
My last point is with regard to the guidelines of consultation on awareness raising, which links to Article 8 of the convention and talks not only about the state but local and national governments, NGOs, disabled persons organisations, DPOs, etc. We all have to combine forces to raise awareness and address ableism and prejudice towards disabled people and towards disabled women and in terms of accessible information and freedom of speech, which relates to Article 21 of the convention.
To add to Una's point, we need to have every type of information in as many accessible formats. For example, for people such as me, who have vision impairment, that has to be electronically accessible, but not only a scanned version of a piece of paper. That scanned version needs to be converted into an accessible portable document format, PDF, or Word version that is accessible to screen readers because it is not only people with visual impairment who use screen readers. There are people with other disabilities who use those. We need to keep in mind that easy-to-read, sign language etc. I just wanted to highlight that.
Ms Derval McDonagh:
To build on Eliona's point about the flexible and multiple ways we should be trying to reach people and support people, and going back to the point Una and I made in our opening statement about these definitions in terms of people who are "hard to reach", which is an easy way of letting ourselves off the hook, we need to ask ourselves time and again who is not at the table and why, and make every effort to make sure those individuals are included.
Senator McGreehan asked about the consequences of not having people included or not consulting people. The consequences are devastating. We have entire groups of people throughout the country. I would speak from my experience of who we at Inclusion Ireland speak to and who we interact with every day. There are thousands of people living at home with family members for decades longer than they should have to without ever having a hope or a chance of moving out into a home of their own and having their own front-door key because there is simply no plan. A couple of our members said recently that these individuals are not hard to reach; they are easy to ignore. They are not in policy. There is no plan. That is incredibly soul-destroying for those individuals and for the families who were looking forward to a time when life would move on, as it does. We all expect life to move on. You enter your 20s or 30s and you put in place for your own life. That is not happening for many people with intellectual disabilities as a direct result of being easy to ignore, and that has to be addressed.
Included in those individuals also have to be the people who are living in institutions right now who are incredibly easy to ignore, often behind high walls and not seen and not heard. There is a lot of work to be done to make sure those individuals' voices are heard. Obviously, through representative organisations, advocacy organisations and NGOs, such as ourselves, we need to continue to amplify that voice and make sure there are ways and mechanisms to hear those individuals' voices. We are seeing the stagnation of deinstitutionalisation - we spoke about that recently at a committee - because we are not hearing those voices. That is having devastating consequences on people.
Returning to Deputy Cairns's question about resources and the time it takes, we need to get real about this. There are individuals who need a lot of support, and that is fine. They do and they need tailored, targeted and individualised supports. That is perfectly okay. We need to get as many of the barriers removed as possible, as Nem has pointed out, in terms of universal design and making sure we are not repeatedly putting the onus and the burden on people's individual shoulders. However, there are people who need individualised supports to access their rights as well and we need to take that seriously and resource that. We are doing some work at the moment around self-advocacy in the Sligo and north-west region and it is taking a considerable amount of time to build the relationship with the individuals with intellectual disabilities who have been so marginalised and oppressed for so long and so left out of these conversations. It takes time to build that trust. It takes time to build that relationship. It takes time to bring everybody to the table, not only speaking people but people who are non-speaking and people who need all sorts of resources to speak up, and build that relationship so that people can eventually be in shared spaces with other disabled activists as well and be an equal participant in those shared spaces. There is a lot of groundwork that needs to be done at a community level for that to happen and we cannot underestimate the investment in that. The consequences of not doing this properly are seeing the continuation of institutionalisation and the continuation of people living at home with their families with no chance of moving out into a home of their own and us not hearing the most important voices in all of this.
Dessie Ellis (Dublin North West, Sinn Fein)
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I thank the panel for all the presentations. Each of them - Eliona, Derval, Una, Amy, Sarah and Nem - spoke about gender-based violence and that the instance of it is higher in women with disabilities. I was struck by what Nem said about there being a lot of evidence to suggest it is members of the family, people who are close to them or carers that this comes from. Obviously, there is a huge risk in anyone speaking out in those situations because they will obviously feel threatened, their children will get taken away or there will be repercussions within the family. Some families obviously have no supports and there is no one there. I just do not know how that is dealt with. Maybe they can give me an example of how that is dealt with.
There is also a situation where some women with intellectual disabilities have addiction problems.
How is that dealt with? We are all in favour of advocacy. Does the National Advocacy Service help people and guide them in certain ways? Women with disabilities have to put their hands in their pockets so often to pay for extras, and that puts massive pressure on anybody in that position. What problems does that create? There are multiple options when it comes to the way people look at things. Self-advocacy is, obviously, the best way, but advocacy in general is the way to move forward. Getting people to engage with self-advocacy is probably difficult in many cases. When people talk to the witnesses or the various other organisations, how do they respond? Are they passed on to other groups? Is there a guide whereby they move from, say, one organisation to another?
Nem Kearns:
I had been looking to comment in response to Senator McGreehan's point. This is important but very simple. Disabled women are women, so flexibility on time is also very significant. Most disabled women have children or caring responsibilities, and a lot of consultations are held at times when women are less available. An easy win, therefore, to increase participation is simply to be more flexible with time.
Another point in that regard, which speaks to questions from both the members, is that we need to get rid of, or severely reduce, mediated consultation. We are often asked to consult through another body or organisation and there is little control over what comes out of that consultation. We have had consultations where entire topics were, for want of a better word, censored. Disabled women were being consulted by, say, the HSE but another body in between was holding the consultation on behalf of the HSE, so the HSE never got to hear what the disabled women had to say. That happens frequently. Similarly, an intermediary body might decide what is important arising from the consultation, even if no agenda is at play, but it might not have the insight into lived experience to understand what the most important points to report are. We would like to see direct consultation.
I will leave it to Ms Coates and Ms McDonagh to speak to the experiences of women with intellectual disabilities, given they have much greater insight and experience on that.
As for our members or others coming to us and whether we pass them on, although this is probably not the answer the Deputy is looking for, it depends on the situation. The National Advocacy Service provides fantastic support for what it does. If someone is looking for practical support and advice, it will depend on what they are looking for. It might be an issue for the Workplace Relations Commission, WRC, or the National Advocacy Service when it comes to self-advocacy. It is highly individualised. People have different needs and DPOs are best placed to support them with that. That includes support needs but also confidence-building in respect of that one-to-one relationship and peer mentorship. I would never have got into advocacy if I had not happened to fall in with a bunch of fantastic disability advocates. For most people I know, the best and most meaningful route to advocacy and to building confidence in one's own voice has been through other disabled people, and there really is no replacement for that. We need capacity-building and access to training courses, but what we need most is access to our own communities and to be able to speak freely with one another in an unmediated space.
Ms Amy Hassett:
Nem highlighted a number of the points I had intended to raise. Most disability advocates have followed on from other disability advocates. Somebody will have tapped us on the shoulder at some point and asked us to have a chat about the UNCRPD or various other bits. Anything, therefore, that supports our access to our community is critical.
We have not yet touched on one of other functions of DPOs. While half of what we do is advocacy and is external to the organisation, involving talking to groups and individuals, the other important half of what we do involves talking to our communities, building a sense of community and building networks between disabled people. Some of the most impactful things DWI has done are not necessarily the documents we have written, with all due respect to our appearances before the committee, but our social events. It is about creating space for disabled people to make friends with other disabled people and develop their own communities and networks of support. When we talk about empowering disabled people, from our perspective, we would always advocate that as much as we want disabled people to be independent, we want them to be interdependent. We want them to be dependent on other people but in ways that are empowering to the individual. We want to be able to choose who supports us and helps us. Some of the work of DPOs is just about connecting disabled people with other disabled people in order that they can support one another, and there is no replacement for that anywhere else. The social and community aspect, therefore, is very important, and disability pride and so on come along with that.
In respect of consultation, Nem made a point about caring responsibilities and Deputy Ellis spoke about getting people involved and supporting them and asked what the impacts are for people who have to put their hands in their pockets to fund advocacy. It is difficult and time-consuming to be an advocate. For us to hold a consultation in an accessible way with our members, we cannot hold just one consultation but have to hold three. We have to hold one in the evening to support certain individuals who might work full time, one in the morning for people who may not work in a nine-to-five job, which is a more accessible time, and another at the weekend for people who cannot make the other ones. That is, fundamentally, how we conduct a successful consultation process. We are not going to catch everyone even through that but, because of people having different caring responsibilities, jobs and so on, that is how we have to do it, but that is very difficult. We talk about people having to put their hands in their pockets to fund advocacy, but we have to create the infrastructure around that, which is incredibly difficult when we are talking about a community who are already living in poverty at higher rates or at greater risk of doing so, with the additional costs of disability and all the issues we speak about at almost meeting we attend.
With regard to how we support individuals in their self-advocacy, we do not have the resources or training to support people with individual cases, so wherever we can, we refer them on to other organisations that have that capacity. Even understanding where to send people or what to tell them to help them is a long process. It takes time for us to develop our internal capacity to say that if someone is experiencing a given problem, he or she will need to talk to the WRC and not another body, or that he or she needs to go to the National Advocacy Service regarding a particular issue. Even that sort of capacity-building takes time and is very difficult.
I wish to highlight two matters relating to previous comments. The guidelines on involving disabled people in consultation have been updated as of 2022 and are available on the NDA website. They have been updated since 2014. That update was released in September 2020.
As regards advocacy skills and children, one of the challenges is that there are currently no DPOs that focus on disabled children. The involvement of disabled children in decision-making and having their voices heard is a massive area of concern for us and other DPOs. There is a need to focus on ensuring disabled children specifically, as well as children more broadly, have their voices heard and their decisions respected and things like that. That is essential but it is not currently being considered. There is a need to focus on it moving forward.
Ms Eliona Gjecaj:
On the question regarding examples of situations of domestic violence, there is a big essay or article by a disabled woman who got into an argument with her partner. She told her partner she had decided to leave and asked to be brought her scooter so that she could do so. That is an image of how complicated getting out, speaking out or speaking about one's current situation can be. As Nem Kearns said, disabled women are women too. That connects with a point I made in my opening remarks. When it comes to escaping or running away from violence, we need to know where to run to. Most shelters are inaccessible. If disabled women are under certain financial restrictions, they may not be able to afford a hotel for the night on their own. In addition, some of the support services are attached to the person's house or area, rather than to the individual. Not only is there the risk of having one's children taken away, there is also the risk of having no support for several months in the new domicile or rescue centre. One needs to have all the documentation to apply for support needs, such as PA support or other services one may need. That adds to the stress.
Domestic or gender-based violence of any sort is not easy to deal with for anyone, never mind when the person must also deal with housing issues, housing benefit, medical cards, post, applications for support staff and so on. There is also the issue of finding accessible housing and being able to afford the rent in the current housing rent market and so on. It brings many issues together. On top of that, there is a lack of information in an accessible format regarding where a person can go or reach out to. It can be the case that a person's partner, family member or carer can instil fear regarding where the person will go and who will provide better care than the person is currently receiving. In a way, the devil you know is better than ten devils you do not know. In the context of domestic violence, some people have to compromise in order to keep their support services, housing benefits and so on, but that should not be the case. It should not be left to disabled people to endure that violence and compromise their safety, psychological health and support services due to the fear of losing their kids or supports and so on. This is important. I wish to highlight the issue because many people may struggle to speak about it due to its being hushed up or too sensitive. It is not taboo. We need to talk about it, no matter how sensitive or difficult it is or how narrow the window for consultation, communication and conversation. If we do not do so, things will never change.
Ms Derval McDonagh:
The Deputy referred to the cost of disability and the additional cost disabled people face. More than a year ago, the Government published its report on the cost of disability. An implementation plan in that regard has yet to be published. People with intellectual disabilities are facing additional costs of between €9,000 and €13,000 per year on various outputs they require to have quality of life. That needs to be addressed as a priority because it is a further marginalisation and inequity. It is leading to all sorts of consequences. The Deputy asked about the consequences in that regard and for real-life stories. We know of a woman named Ann who lives in rural Ireland and has an intellectual disability. She wants to go to college to do a training course but she does not drive and cannot afford a taxi and there is no public transport available to get her to the college. As a result, she has turned down the offer of the course and will remain living below the poverty line. The State is not supporting people or getting the systemic barriers out of their way. Situations such as that facing Ann are happening every day of the week for disabled people. The real-life financial burden people are carrying has to be addressed.
The Deputy referred to the lack of support to families on an individualised basis. I wholeheartedly agree in that regard. Some people with intellectual disabilities wish to stay living within the family home and their families, too, wish to continue with that arrangement. However, there is very little support on an individualised basis available to those persons to make that real and ensure the person has his or her rights met. There is a need to ensure family members do not have to be carers but, rather, can just be a mum, dad, brother or sister. Requiring them to be in a caring role all the time keeps that dynamic going and keeps people in that child zone for the rest of their life whereas, in reality, they are adults who deserve to be independent and have their own life. There needs to be an investment in PA supports, home supports and individualised packages for people to stay in the family home if that is what they choose. There are some people who wish to do that. It goes back to having flexible systems. There is not one thing that suits everybody. Some people want to stay living at home while others wish to move out into a home of their own. There should be a flexible model that can support and enable that. We do not have such a model at the moment, however.
On the advocacy side, the different terms and how they are used can be confusing. Self-advocacy is critical. Ms Coates will speak on the impact that has had on her life. There is a time and place for services such as the National Advocacy Service, such as when a person needs support in respect of particular issues and is trying to navigate the most complex of systems. The health and social care services are incredibly complex. Inclusion Ireland runs an information and support service. People with intellectual disabilities and family members contact us all the time and we regularly direct them to the National Advocacy Service. We appeared before the committee a number of weeks ago with the National Advocacy Service. It stated that it has not received any additional funding since its inception, yet it continues to experience a growth in the number of people it is trying to support. In addition, it is seeing an increase in the complexity of the cases it is being asked to support. It was initially set up to provide support to persons on a particular issue and then move on but when one is supporting a person with an intellectual disability there are multiple and complex issues, such as housing, family or other issues within the health and social care services that need to be navigated over time. There are now waiting lists for the National Advocacy Service for critical issues. The service itself would state that is leading to unacceptable delays in people accessing their rights on an individual basis. That needs to be addressed. Ms Coates, as chair of the Inclusion Ireland self-advocacy committee, will share her views on the different types of advocacy and what that has meant for her.
Michael Moynihan (Cork North West, Fianna Fail)
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So very true.
Eileen Flynn (Independent)
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Ms Coates is right that if you do not ask the question then the answer will always be "No", and if you do not challenge the system then you most definitely will not get what you want. It is a shame that in 2023 we are talking about equal access and asking for services to enable people to live an independent life, if possible.
Yesterday, I gave a talk in the Seanad about how International Women's Day should be celebrated. We need to celebrate the event but, most importantly, we need to look at what we need to do for disabled women and women of colour, so the others in society. I made the following point yesterday but I think that it is so important that I will repeat it here again. Through my activism I have always learned that you go into rooms and you ask yourself the question of who is not here. Even in our Parliament people with disabilities are excluded from decision-making and from being in the room just like the Traveller community and black people. Our political system does not represent the rich diversity that exists within Irish society.
On domestic violence services, there are supports but they are not fit for purpose. Do disabled women have equal access to refuges or a safe space whether it is for a week, a fortnight or whatever? Do the witnesses believe that disabled women have equal access to refuges? I am a member of the Traveller community and work as part of the National Traveller Women's Forum Ireland at which we have always spoken about equal access and how we are at a disadvantage because of poverty or coming from a very marginalised community.
In terms of disabled women advocating for themselves and participating in organisations, what is the most urgent need in terms of capacity and relationship building? We need consultation but before that we need to have people in these spaces instead of having talking shops and having people talking about us without us, which we see also applies to disabled women.
As people rightly said earlier, some disabled people are not just disabled but are women too. A lot of the time disabled women are just viewed as disabled rather than being seen as a woman with a disability or a person who is disabled. Irish society has a long way to go before we improve rights for disabled people in general but we need to start here. As the witnesses said, they were before the committee two weeks ago with Inclusion Ireland and spoke about funding. What has happened since?
What we can do as a cross-party committee? The committee and its members are passionate about the rights of disabled people and people with disabilities. Until I joined this committee I did not understand what disabled meant. I recall Nem Kearns saying to me, and I feel privileged to work with her, that the person is not disabled and it is society that disables the person. I will never forget that remark and it changed how I view people with disabilities and I believe people's rights should be met. It is 2023 and I want to know from DWI and the witnesses who are advocates in their own right what can we do as a committee.
Ms Derval McDonagh:
Violence perpetrated on women and violence within the home, particularly relating to people with intellectual disabilities, are issues that are under-discussed. Many women with intellectual disabilities live in group homes and congregated settings across the State but they never had a choice about where they lived or with whom they lived. Many of those women can experience violence on a regular basis because they live with other individuals. I am sorry, Chair, but I have a tickle in my throat so perhaps Nem Kearns will speak for a few moments.
Nem Kearns:
I thank Senator Flynn for her questions and for the fantastic work that she does. I will talk about the barriers to equal access to gender-based services and supports but a radical shift is much needed whereby disabled people and disabled women need more of a choice in the topics that are discussed both at this committee, in public consultations, etc. I say that because so often the things that are urgent and important in our lives are not even up for discussion because people do not realise that they need to be discussed. It would be wonderful if we had a more conversational relationship where we can draw attention to the issues that affect disabled women but nobody is looking at the issues or are aware that these things are happening around the country. Such a radical shift is easily done and would be very effective as it would ensure we focus on the areas that really need attention. We must empower disabled people in general, and disabled gender minorities in particular, to make sure that our voices do not continue to be unheard or sidelined because while there is some resistance in some quarters, there is great ambition and support in other quarters but there is a lack of communication. I would love to see much more ongoing communication.
There is not equal access to gender-based services and certainly refuges. We did consultations as part of the third national strategy on domestic, sexual and gender-based violence. We also did a consultation in partnership with Inclusion Ireland that focused on women with intellectual disabilities because they have specific needs, as do deaf women and people who use ISL as a first language, and non-speaking people. These women really need very specific ongoing conversations because they have specific needs and services are not equipped.
Services need to be better financially supported. A number of providers have expressed their interest and commitment. For example, Women's Aid is funding a national research project examining the causative factors for the huge level of gender-based violence against disabled women, what helps them to escape violence, what reduces the level of violence and what supports they could institute. Unfortunately, when Women's Aid funds research, it cannot fund something else. We greatly appreciate the support and recognise that there is an appetite for providing support and support from the services, they need support to do that.
They are doing crucial work. There is very little accessibility. I believe there is only one accessible shelter in the entire county of Dublin, and there are areas of the country with nothing at all. The people who work in the refuges are very ill-equipped to support people. Like Senator Flynn said, they often do not know what disabled means. They have an idea of someone in a wheelchair or someone who is blind, someone they can look at and think they are disabled, but they just have not been given the support they need to understand the dynamic nature of disability and how people can be best supported. There is an appetite for gender-based services and DPOs to work together, which is what will be needed - that partnership to approach this as a partnership issue. As I said, I believe there is one accessible shelter in Dublin. That is what I have heard. That is what I have been told. As to how to contact that shelter or how to find it if that access is needed, I have no idea, and I am a co-director of the only national DPO for disabled women. That is frightening. Even when there are accessible elements of the service, it is very difficult to find out anything about them. There needs to be specific, ring-fenced funding for gender-based service providers working in partnership with DPOs to map out what accessibility is there. They also need the money to adapt the shelters. They do not have enough money as it is to provide shelter for everyone who needs it. We fully recognise that but we also need to be clear that the idea that marginalised women can wait until the end, until it has been fixed for everyone else, is not acceptable and not okay.
Ms Hassett mentioned we have no DPO for children and no direct representation for disabled children. We also have no DPO or direct representation for disabled people from ethnic minority groups. Women's, ethnic minorities' and children's DPOs are specific types the CRPD mentions repeatedly in general comment 7 and states need to be given additional prioritisation. I would like to see specific resource and effort put in because this has to be proactive. There is this idea that children have to get together and form a DPO or the most marginalised people in marginalised communities have to step up and then, maybe in a few years, they will be supported, but that will not work. We need to be much more proactive and we need to reach out to people. I like what Ms McDonagh said, that people are not hard to reach but, rather, overlooked. We need to make sure people living in congregated settings are getting information and receiving education. Many disabled women have never received sex education at any point in their lives. They are also just not given the tools to recognise when something is abuse, and that is on us. We have the information; we need to get it to people. We need to make sure they know their rights and what is unacceptable abuse of them, their lives and their bodies.
The expertise of the community and building partnerships to address these issues are one side. The other point is possibly a little controversial, but when big issues of abuse are discovered and reported, such as the Brandon report, for example, and hats off to those who are working on it, they need to be published. We also need to have insight into the institutional side and the institutional failures because as long as things like that are kept under wraps, we are trying to fight fire with one hand. We need the full picture to make those changes.
Eileen Flynn (Independent)
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I know Deputy Pringle is doing a lot of work at the moment to try to make sure the Brandon report is released. I thank Nem Kearns for that. We will try to include these recommendations in the report, but it is not about recommendations without actions. We need actions.
Ms Derval McDonagh:
I thank the committee for its patience with the frog in my throat. Going back to the point about people living in institutional settings, we know that things are beginning to improve in some areas - that is a fact - but the truth remains there is a large group of people who are still living in institutions and who have never had a choice as to where they lived or who they lived with. Therefore, there may be people living in large group homes where there could be ten, 20, 30, 40 or 50 people living in a campus-type setting. I ask the committee to imagine any one of us being told, "You have to live in this place for the rest of your life, you have to live with these people and there is no chance you will ever have an opportunity to move out of here, even if you are deeply unhappy, even if you cannot stand the people you live with and even if you are deeply frustrated by the people you live with and that is leading to you lashing out or expressing your frustration in various ways." This is captured in HIQA reports quite a bit. We see things about safeguarding and hear terms like "peer-to-peer abuse". These are all terms we use ourselves, but actually, what is happening is violence between people living in these homes and houses, and there is no opportunity for those individuals to move out. We remain with 2,400 people living in these types of settings. Some are at different points on the journey in respect of human rights, but we need to see huge progress and more individualised supports for people. It is completely unreasonable. In no other walk of life would we ask people to stay living together without any choice or control over their lives. It just would not happen. We would not tolerate it. Yet for people with intellectual disabilities that has happened for decades and continues to happen on our watch. If there were an ask from the committee, it would be to reinvest efforts in - I hate the term "decongregation", although it is part of policy and the language around policy - supporting people to move into homes of their own with choice and control.
Mary Seery Kearney (Fine Gael)
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I apologise. I am at a meeting of the Committee on Housing, Local Government and Heritage and in the Seanad this morning. It takes years off my life trying to be in several places at the same time.
I wish to come back to Ms McDonagh on exactly that point of our language and the language of policy. We sanitise the real, lived experience. That was expressed extraordinarily a few weeks ago at the committee in the context of the experience in congregated settings. What can we do better, or what can we can do, assuming we are doing anything, to remove that sanitisation? People can get reduced to statistics, to particular language that removes the humanity from their experience and allows for no sense of urgency. I think of the very first International Women's Day on which the Committee on Disability Matters sat. It was at the height of Covid and we all sat in the Dáil Chamber. We found it a harrowing experience listening to what was said. We have had another International Women's Day since, and here we are today. The things that were there two years ago probably have not changed particularly.
My first question is about language. What can we do as legislators? We have to operate within the language of law for Bills and so on, but what can be done otherwise? I am very struck by the NGOs. Sometimes we say we need additional NGOs, and I was struck by Nem Kearns's comment in that regard. The Government will say that something is to happen and there is real heart for it to happen, but the language creates an almost adversarial competition rather than a facilitation of growth and resourcing of support for growth in the establishment of voices.
A particular passion of mine concerns women with disabilities and fertility and family planning. We are addressing that yet again for the third year running but we may make progress. I am conscious that there are moves for IVF funding support by the end of this year and that individuals in the Oireachtas are writing Private Members' legislation on that. The Department of Health is looking at it. In regard to the AHR Bill, what do the witnesses want people like me to do to make sure there is proper consultation and inclusion of women with disabilities to allow them to grow their families and have full access to becoming parents?
Ms Derval McDonagh:
I will address the point about language. I am sure the witnesses from Disabled Women Ireland and Ms Gjecaj will have a lot to add as well. Language is incredibly powerful. Sometimes at Inclusion Ireland, we get a bit of criticism because we continually challenge language. When there is so much wrong with the system, people can get frustrated by that because they ask why we are going after the words when they cannot get home support for ten hours or cannot move out of the house they are unhappy in. What we say is that we are going after both. It is the language and the systemic barriers. Language is something that sets the tone. It sets a direction of travel and our intention. For example, there is an opportunity with the EPSEN Act. Can we move on from the name of that Act? In our submission, we have called for it to be renamed the Inclusive Education Act. Ideally we should not need an inclusive education Act down the line because it should just be education and we should be inclusive. Step one is at least taking the term "special" out of it. That kind of language lets us off the hook. It is the special people over there who need something special and we better create some special system that those special people can be in as opposed to taking our real-life responsibilities seriously, which is that all children should be able to go to their local school, all schools should be accessible and welcoming, the red carpet should be rolled out and schools should have the resources they need to support every child and should be universally designed. Then within that, there will be children who need additional support. We need to rethink and reimagine what the school day looks like. Such children might need time in their own space moving in and out of mainstream classes. By continuing to call things "special" and "other", we are not taking our responsibilities seriously. Language is powerful and we need to get a group on it and get real. It is 2023 and we are still using that kind of terminology and we need to move on from it. We often get criticised around that but to us, that is really important. Everything we do at Inclusion Ireland is about accessible communication and having a shared language and understanding of the importance and value of human rights and having a lexicon for people who are disabled is something we need to move on from.
Mary Seery Kearney (Fine Gael)
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Inclusion Ireland's website is a real example of inclusion, which it should be. It is great modelling.
Ms Amy Hassett:
I will address the same issues addressed by Ms McDonagh. Language is very important. We may have the same recommendations in our submission on EPSEN. Language is very important because it sets the tone and framework for how we understand disability and disabled people and this is why we keep coming back to it. When we speak about language, we also think about the importance of being flexible in how we use language because different people describe themselves in different ways. When we talk about language, what we try to do is push it towards respecting the individual and the language people want used to focus people's attention on the individual at the centre of the conversation. What does the individual want? What is right for him or her? We have seen in various different circumstances that people can use the right language but when you look at the detail, there are big problems with it so we do not want it to be seen as stating values. It is what you do that is really important. Understanding that flexibility is really important.
We also disagree massively with special needs, additional needs or anything along these lines. Disabled people have the same needs as anybody else. Sometimes they require different supports to ensure those needs are met so we recommend the same thing. There was another question I cannot remember so I am hoping Nem Kearns does.
Nem Kearns:
I will start with language and then address the other question. To highlight what Ms McDonagh and Ms Hassett are saying, it is not just about language. We are trying to use language as a tool to shift perspective. I am a co-founder of Neuro Pride Ireland. The language of neuro-divergence is a fundamental shift from the idea that being neuro-divergent is a broken deficient version of being human towards believing there is diversity in humanity and these are all equally valid ways of being human. The science backs us up. Autistic people have been shown to be at least as effective at communicating with autistic people as non-autistic people are with non-autistic people. It is a communication breakdown with two different neuro types and the historical and ongoing view is that autistic people are the problem and that they cannot communicate. That does not work in a conversation. If you accept neuro-divergence, you really need to shift how you think. That will also shift the experiences of neuro-divergent people in the world and the supports that are offered. We really want to see a huge move away from social skills training for neuro-divergent people. It is quite insulting to be told that your social skills are less good and you have to communicate like us because we are the best at it. That was just a personal rant.
Mary Seery Kearney (Fine Gael)
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A very real one.
Nem Kearns:
There are some other factors. Shifting from the mindset of charity to rights is hugely important. That is what all of us here, including committee members, are here to do - to implement the UNCRPD and move to a rights-based approach across all of society. Much of this language is really unhelpful. My sibling works with children in a gender-based violence refuge. When they get an intake form that states this child is special needs, that is very dehumanising and does not tell them how to support that child. They have no idea from that phrase what that child needs and struggles with. The language is also preventing people from being able to support and meet the needs of the individual so we want to see it move towards individualised supports.
Regarding assisted human reproduction, this is massively important and it is so great to see that the Senator is also really passionate about it. It is such an important and nuanced topic that I could not do it justice here. It is something on which we would very much like to follow up with the Senator. In case members did not see it, we provided the Reproductive Justice Project final report as an attachment to our submission for today. It is a fantastic report from a final project that looks at all aspects of parenting, reproduction and access to maternity services for everybody and is a very good starting point. I recommend that the Centre for Disability Law and Policy in NUIG is closely consulted with. Selina Bonnie is someone who is doing fantastic work-----
Mary Seery Kearney (Fine Gael)
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You work very closely with her. I think she is amazing. She captures exactly what we need to be doing very well.
Nem Kearns:
There are wonderful people to speak with. Another thing that is not covered under the scope of the Reproductive Justice Project is, and I am probably going to get this acronym wrong because I always do, the ESRI.
They published a Government commission report a few months ago which, among other things, highlighted that children of disabled people are one of the groups in society experiencing the highest level of poverty. While it was terrible to see, we knew it was happening, so it was good to see it captured. Often, when we talk about disabled children, we assume all of their parents are able-bodied, for some reason, which is very much not the case, and we usually forget that disabled people are parents.
I definitely want to follow up with the committee on this issue. One of the things that needs to be kept in mind is that whole-of-life picture. It is so important that disabled people have equal access to parenting, which they very much do not at the moment, but also that they are equally able to provide for their families and support their children when they are born. I would love to see a robust approach because it is such a fundamental aspect of being human and it is heart-breaking to see the number of disabled people who are denied parenting.
Ms Eliona Gjecaj:
There is so much I want to say but I will try to keep to the questions. To pick up on language, we need to frame it in terms of the law. To reiterate, Ireland has ratified the CRPD and we are technically at the implementation or domestication of it into our Constitution. That means the CRPD is an international legal instrument and, therefore, we can and should take the language from the CRPD and use it.
Language is a powerful tool. It does not only stay as law or as a written paragraph in the Constitution, and it is rolls out into the society through its use by Members of Parliament, Ministers, educators and all of society down to its youngest members, with children in kindergarten calling each other “special needs” or calling this or that child “special needs”. That has a negative connotation to it. It tells people nothing about how to accommodate or assist that individual, but rather that these are different, these are the others, and we have to have something different to address these. That should not be the case. More often, people are to be treated the same way, but with other means, with different access and with inclusivity of supports. We need to provide the same chance and opportunities.
I want to also highlight reproductive justice. It is great to see the issue recognised and that the conversation is open and ongoing, but it is a massive topic and it will not do it justice to just talk about it in two minutes. I want to pick up from Ms Kearns and to bring forward the issue of lack of training. That cuts across every aspect of our life, whether it be parenting classes that people attend when expecting a first-born, accessibility of information or accessibility of those classes and other aspects, for example, training with regard to being equal before the law and having equal access to the justice system. There is also the lack of training for those working in shelters and in the justice system, as we know it right now, and for those working in the support services.
I also want to highlight the resistance of certain people or support services in admitting perhaps that times have changed and that, therefore, support services need to evolve with the times. Sometimes people are resistant when we, as disabled people, advocate or speak our minds on how a support service should be and, instead of that being taken as a conversation, it is taken in a defensive way, as if we are criticising. Personally, as an advocate, I see everything as a conversation, as an open platform to improve, whether that be support services, healthcare or otherwise. My point of view is let us talk together, let us consult each other, let us move forward and let us make sure that we provide an inclusive, accessible future in every other policy, in every other law and in every other practice that we do.
In answer to the point made by a committee member, we are not just disabled and we are not just women at a given time. We are disabled women with different gender identities, with different sexual orientations, with different ethnic backgrounds, with different education levels, with different legal status and so forth. Each one of these aspects of our being affects a given application or a given aspect of what we are looking into. For example, I am a disabled woman with a different ethnic background so, sometimes, people I interact with forget the fact I am disabled and that I am a woman, and only focus on the fact I am an immigrant or a migrant, and so forth. The negative connotation between ableism, sexism and also racism come together, and I am falling into the deepest cracks possible – I am using myself as an example to represent many people in my shoes. It is important that language and law reflect those intersectional identities and intersectional aspects of our being and also of our individual needs.
Mary Seery Kearney (Fine Gael)
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That is a brilliant summary of it. Thank you.
Michael Moynihan (Cork North West, Fianna Fail)
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Absolutely. Thank you all sincerely for your evidence, your challenge to the system and your highlighting of the challenges. This meeting was built around self-advocacy and women with disabilities in order to celebrate International Women's Day. All of you outlined in a very meaningful way the challenges that are still to be met and the needs we need to address, including the need to drive our committee further to advance the causes and break down the barriers, brick by brick. I thank you all for your contributions. In the spheres in which you work, I ask you to continue that great work. We look forward to engaging with you on every occasion. This morning’s meeting was to outline the real challenges that are there for people with disabilities, for women with disabilities, how society silos them, for want of a better term, and how we need to break that down. I thank you sincerely for that.
With regard to the committee members, the art of bilocation has not yet been figured out and members have been running from one committee to another. However, everybody comes back to make their points in the committee. I thank them for that and for their dedication to the committee. Only with the members can we be strong to try to advocate for what we have been asked by the witnesses. I also sincerely thank our team for what they do.
The committee will adjourn until 3.15 p.m. on Wednesday, 22 March 2023.