Joint Committee on Disability Matters díospóireacht -
Tuesday, 9 Mar 2021

Nothing About Us Without Us - Achieving Equal Rights and Equity for Women with Disabilities: Discussion

Chairman

I welcome everyone to this meeting in the week of International Women's Day, which will deal specifically with women with disabilities. The purpose of the meeting is to discuss "Nothing about us without us - achieving equal rights and equity for women with disabilities" and to celebrate women with disabilities in the context of International Women's Day, which took place yesterday. We recognise that women and girls with disabilities are subject to multiple forms of discrimination and that positive measures need to be taken to ensure they are protected against multiple forms of discrimination and can enjoy human rights and fundamental freedoms on a basis equal with that of other citizens, which is called for by Article 6 of the UN Convention on the Rights of Persons with Disabilities, UNCRPD.

The committee recognises the scale of the work ahead and that the rights of women and girls with disabilities must be included in all actions aimed at implementing the UN convention. It has been pointed out over the past 48 hours that 25% of women with disabilities in our country live in poverty. As a committee, we should strive to do whatever we can to advance the causes of all people with disabilities and in particular women. One quarter of women with disabilities live in poverty, which is a frightening statistic that we should bear in mind at all times.

On my own behalf and on that of the committee, I extend a warm welcome to Ms Catherine Lane, women in local, community and rural development officer at the National Women's Council of Ireland; and to Ms Maureen McGovern, disability community activist, and Ms Selina Bonnie, vice chairperson of the Independent Living Movement Ireland, who are appearing on behalf of the National Women's Council. I also welcome Ms Amy Hassett and Ms Maria Ní Fhlatharta, co-directors of Disabled Women Ireland.

I remind members that they are allowed to participate in this meeting only if they are physically located in the Leinster House complex. In this regard, I ask that those who are joining us remotely confirm they are on the grounds of the Leinster House campus prior to making a contribution to the meeting. A good number of members have joined us for the meeting in the Dáil Chamber and I welcome them.

For the information of anyone watching the meeting online, I point out that witnesses are accessing the meeting remotely. Due to the unprecedented circumstances, I ask everybody to bear with us should any technical matters arise, which they do from time to time.

Before we begin, I draw the attention of members and witnesses to the issue of parliamentary privilege. They are directed that only evidence connected with the subject matter of these proceedings is to be given and are asked to respect the parliamentary practice to the effect that where possible, they should not criticise nor make charges against any person, persons or entity by name or in such a way as to make him, her or it identifiable. Witnesses giving evidence from a location outside of the parliamentary precincts should note that the constitutional protection afforded to witnesses attending to give evidence before committees may not extend to them. No clear guidance can be given on whether, or the extent to which, the evidence given is covered by absolute privilege of a statutory nature. Persons giving evidence from other jurisdictions should also be mindful of their domestic statutory regime. If witnesses are directed by the committee to cease giving evidence on a particular matter, they must respect that direction.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise nor make charges against a person or an official by name or in such a way as to make him or her identifiable.

I invite Ms Lane of the National Women's Council of Ireland to make her opening remarks.

Ms Catherine Lane

The National Women’s Council welcomes the invitation to speak to the committee and present at this sitting celebrating disabled women on International Women's Day. We highlight the need for other Oireachtas committees to have dedicated sessions on the impact of Covid-19 on all women.

The National Women's Council is Ireland’s leading women’s representative organisation. We seek full equality for all women and draw our mandate from a membership of more than 190 groups and organisations from a diversity of backgrounds, sectors and locations. We have been working collectively with disabled women since March last year on many equality issues, such as inclusion and the visibility of disabled women and their experiences across the work of our organisation and also within the wider women’s movement. We felt it was important that today, two disabled women from the group and representing our group member the Independent Living Movement Ireland, Maureen McGovern and Selina Bonnie, would address the committee directly. We also look forward to listening to Amy Hassett and Maria Ní Fhlatharta from Disabled Women Ireland.

We look forward to engaging with and further supporting the work of the committee in any way we can and wish all members a happy International Women's Day.

Chairman

I thank Ms Lane and invite Ms McGovern, disability community activist, to make her opening statement.

Ms Maureen McGovern

I very much welcome this invitation to speak to the committee as a disabled woman who has struggled all of my life to live in a society that discriminates against me because of my impairment and gender, be it in education, training and employment, healthcare or in social, economic and cultural life. I have been a strong activist for the human rights of disabled people at local level for most of my life. My work is informed by the issues of concern to me as a disabled woman and member of the local non-governmental organisation, NGO, Disability Action Collective, in the Ballyfermot and Chapelizod area, which has the largest population of disabled people in an urban setting at 20%.

My work is underpinned by an understanding of the social model of disability. This model indicates that disability is caused by the way society is organised rather than by a person's impairment. It looks at ways of removing barriers that restrict life choices for disabled people. I also work from a disability equality perspective. This is a belief that I, or we as disabled people, should enjoy equal rights and opportunities to participate in economic, social and cultural life, have choice and control over how we live our lives and are enabled to reach our full potential.

As a disabled woman who has experienced sexual violence over a long period, I did not get the same supports that a non-disabled woman would have at that particular time. We have made a small bit of progress in this area but for all disabled women to live free from violence, more action is urgency required. After years of working really hard to get an understanding of the issue, I believe the following:

Disabled women are not visible in the wider response to violence against women. Data on disabled women do not always exist but the following statistics highlight disabled women’s increased vulnerability to violence. The European Union Agency for Fundamental Rights, in an EU-wide survey in 2014, found 34% of women with a health problem or disability have experienced physical or sexual partner violence, compared with 19% of women who do not have a health problem or disability. Recent research from NUI Galway found that disabled women are more likely to experience violence, with 40% of disabled female students reporting experience of rape, compared with 27% of non-disabled students.

More resources are needed to ensure access to support for disabled women across the country. It is vital they know that supports exist and that our safety is paramount, particularly during this public health crisis. Alongside this, disabled survivors of abuse should be involved in designing better support and accessible awareness raising campaigning. For example, there should be more visibility of disabled women in the "no more excuses" campaigns. We know home is not a safe place for many women.

More research is needed to understand the dynamics of domestic abuse and institutional abuse and to ensure legislation adequately protects all women. Disabled women living in congregated or institutional settings or with families may find accessing specialist support agencies difficult due to a lack of privacy or access to digital devices. The Second National Strategy on Domestic Sexual and Gender-based Violence 2016-2021 has no targeted interventions with disabled women and we urgently need consistent and quality data on disabled women’s experiences of gender and sexual-based violence.

Disabled women are under-represented across all levels of leadership in public and political life. We do not have an identified disabled woman representative in the Oireachtas and there is only one disabled woman councillor in local government. As a disabled woman who is very active in my local community, I often feel my voice is not listened to due to my impairment and gender, which affects my mental health greatly. I am not the only disabled woman who has been subject to this experience and this affects disabled women across the country fighting for the rights of disabled women to fully participate for change at local level.

We call on the committee and the Government to seek the input of disabled people’s organisations, including disabled women’s organisations locally and nationally, in all policies that affect disabled people. As disabled women, we want to see the full realisation of the rights of disabled women, as set out in the UNCRPD. The State must take the necessary steps to ensure that all disabled women can fully realise their social, cultural, political and economic rights. I look forward to engaging with the work of the committee further and wish you all a very happy international women’s week.

Chairman

I thank Ms McGovern for that excellent contribution.

Ms Selina Bonnie

I am speaking to the committee from Dublin 15. I thank the committee for the opportunity to share my experiences and observations regarding reproductive justice, particularly for disabled women in 21st-century Ireland. I am here not only as a member of the National Women's Council disabled women’s group and vice chair of Independent Living Movement Ireland but also as a survivor of Irish assisted human reproductive services and a regional ambassador for the NUIG Centre for Disability Law and Policy Re(al) Productive Justice initiative. I thank Dr. Áine Sperrin from Galway for her support with my statement.

I speak to the committee as a disabled woman and not as a woman with a disability. This fundamental social rights-based definition underpins my statement and my life. According to the 2016 census, the total number of disabled persons in Ireland was 643,131, or 13.5% of the population. Almost half of those are disabled women. However, little attention has been paid to the specific experiences and needs of disabled women in Ireland. For example, 63.7% of disabled women are mothers and yet disabled women are not mentioned in our current national maternity strategy.

I will focus on two key issues of reproductive justice: assisted human reproduction and disabled women’s access to essential health services. Reproductive justice is the ability to make decisions and have choices respected around becoming a parent or not. This includes fertility, contraception, including assisted human reproduction, abortion, pregnancy, birth and parenting, including fostering and adoption. The Re(al) Productive Justice project has identified discrimination for disabled people on these issues in many forms. These include physical infrastructure where reproductive health and parenting services are delivered being inaccessible; historic and contemporary use of long-term contraceptives without informed consent; ableist attitudes across assisted human reproduction, maternity and parenting service staff; a lack of accessible information across all stages of reproductive decision making; a gap in knowledge among health professionals about the support needs of disabled people accessing reproductive services; increased interventions and monitoring of disabled parents that is disproportionate to non-disabled parents; and a lack of uniformity about the use and quality of parental capacity assessments. There is also a gap in data about the provision of reproductive services to disabled people, particularly with the new framework for abortion services. Finally, the current legal capacity framework and delay in full realisation of the UNCRPD contributes to violations in this part of disabled persons' lives.

Disabled people with genetic and-or hereditary impairments, particularly disabled women as the female body is the primary site of most assisted human reproduction treatments, often meet significant resistance from the medical profession when attempting to access assisted fertility services. I have experienced this discrimination. Based on my personal experience and as an activist and academic in the area of reproductive justice, I have significant concerns about the general scheme of the assisted human reproduction Bill 2017 and its potential negative impact on the rights of disabled people to access assisted human reproduction services.

My main areas of concerns are head 7, which deals with the welfare of the child, and head 30, which deals with pre-implantation genetic diagnosis, PGD. For brevity, rather than detailing my concerns now, I have included them as an appendix to my written statement. However, my urgent concern is that there is a glaring absence of the voices and experiences of people identifying as disabled in the public meeting list of witnesses and the 31 written submissions to the pre-legislative scrutiny of the general scheme of the Bill. This situation must be rectified before the Bill progresses.

Due to accessibility issues and lack of universal design in mainstream services, disabled women often experience poorer access to health and social services. Disabled women experience barriers to accessing health screening services, resulting in lower uptake of breast and cervical cancer screening. Qualitative and quantitative data are not collected based on disability and it is essential that this be addressed to enable future planning of services so that they will be more accessible and inclusive. Qualitative data are particularly essential as often the lived experience can radically demonstrate where services that appear inclusive and accessible on paper are failing. For example, I have heard countless accounts from fellow disabled women of how the services are failing them.

Depending on the equipment available in individual surgeries and the location of colposcopy clinics, many disabled women are faced with significant travel to access services that meet their individual support needs. Often, the ability of disabled women to access these essential services will depend on accessible transport and an allocation of sufficient personal assistance hours or appropriate Irish Sign Language, ISL, interpretation. In addition to physical and information access issues, attitudes also have a significant impact. For example, the CervicalCheck women’s charter informs disabled service users: “If you have special needs and require assistance in accessing the programme, CervicalCheck will support you”. Disabled women do not have special needs; we have specific access needs.

Regarding disabled women who are wheelchair users, BreastCheck states that some wheelchairs can be used by women using the mammogram machine, depending on the design, size and weight of the chair. For women whose wheelchairs are not appropriate, a screening chair can be provided to enable access. It is not mentioned, however, if a hoist will be available. I have heard many stories concerning disabled wheelchair users who have not been provided with hoist access and who have been made to feel as if they have been in the wrong for needing the access. In general, there is a significant need for innovation and universal design in the medical field. Disabled women are not the problem; the responsibility lies with the designers of services and equipment. If we can put a rover on Mars, surely we can design universally accessible diagnostic or therapeutic equipment.

We need gender sensitive and accessible health services that are delivered with dignity and are sensitive to the diversity of disabled women’s needs, experiences and backgrounds. Every individual has the power to effect change. Members, as elected representatives, have greater power and therefore also a greater responsibility to use their power, individually and collectively, to effect change.

I will conclude with my recommendations on how positive change can be brought about for disabled women regarding reproductive rights. These are as follows: ensure data collection is disaggregated by disability in essential areas such as BreastCheck, CervicalCheck and all reproductive health services; strongly advocate for innovation of accessible, inclusive services and universal design; meaningfully address the absence of disabled people’s voices and experiences from pre-legislative scrutiny of the assisted human reproduction Bill 2017; ensure the ethics committee of the proposed assisted human reproduction, AHR, regulatory authority, when established, includes the voices of disabled people; and consider disabled people’s access needs in all areas of service provision, not just in the public areas of life such as transport and education.

Access to the realisation of private rights such as reproductive justice is essential for quality of life. Disabled women need, and have a right to expect, accessible health and reproductive services that are delivered with dignity and are sensitive to the diversity of our needs, experiences and backgrounds. This includes race, sexuality, gender identity and disability. I thank members for their time and I hope they enjoy international women’s week.

Chairman

I thank Ms Bonnie for her contribution, and I ask Ms Amy Hassett to make her opening statement on behalf of Disabled Women Ireland, DWI.

Ms Amy Hassett

On behalf of Disabled Women Ireland, I thank the Chair and members of the committee for the invitation to speak today. We welcome the approach of the Joint Committee on Disability Matters in engaging with our representative organisations in a meaningful way.

Disabled Women Ireland is the national disabled persons' organisation, DPO, representing disabled self-identified women and non-binary people. A DPO is an independent membership organisation run by and for disabled people. DPOs are separate from service providers and exist to serve and represent their members on all issues impacting them. They have an unrivalled expertise and it is essential to bring this to all conversations about disability matters. Drawing on our collective lived experience, we can provide an analysis of the systematic barriers that impact us and provide the solutions to these issues. Too often, we find ourselves spoken about but not spoken to. DPOs must receive meaningful financial and practical support to cultivate this expertise so that we are enabled to have real input in the decisions impacting our lives. This necessity has been highlighted most recently during the Covid-19 pandemic when DPOs were overlooked and ignored. This is particularly jarring given that data on disability deaths, to which other experts should supposedly have access, do not seem to exist. Historically, women have found themselves marginalised and excluded from decisions that impact their lives. Indeed, the glass ceiling that women have experienced is double-glazed for disabled women.

Disabled women are more likely to be subjected to domestic, sexual and gender-based violence, yet a significant proportion of gender-based services in Ireland are not accessible to disabled women, including intimate partner violence supports. Screening tools, such as CervicalCheck and BreastCheck, are not accessible to many disabled women and nor for that matter are a number of sexual and reproductive healthcare services that others take for granted. Education and employment attainment is lower among disabled people than in the general population and is notably lower again for disabled women.

Disabled people fought for decades for remote learning and employment and were told it was impossible, yet one year ago this week, it was brought in overnight. For those in employment, there is no guarantee that working from home provisions will be supported as a reasonable accommodation in the aftermath of the pandemic. Flexible working conditions are particularly important for disabled women, who are more likely to have care responsibilities for children or other family members. These, among other factors, result in a sizeable portion of disabled women living in consistent poverty. Ireland is lagging behind the rest of Europe in adequately facing these issues, being one of the five countries with the lowest performance with regard to unemployment rates and the risk of poverty for disabled people.

Chairman

I thank Ms Hassett, and I ask Ms Maria Ní Fhlatharta to make her opening statement to the committee, also on behalf of DWI.

Ms Maria Ní Fhlatharta

This is very much a continuation of Ms Hassett's contribution and it was co-written by our membership.

It was encouraging to see some small steps being taken to address the issues causing widespread problems in our community, including the prompt response of the Minister, Deputy Humphreys, to the barriers facing disabled students offered scholarships, an issue so effectively raised by Catherine Gallagher. Individual changes are welcome, but we must also look at the systemic approaches which create this environment. Currently, the majority of supports available to disabled people are means tested. The make work pay scheme goes some way to alleviating this issue, but disabled people still risk losing their supports if they want to return to work. This creates barriers for disabled women in particular in that they will experience the gender pay gap as well as the disability pay gap.

Poverty restricts our choices. It undermines our dignity and it has been a root cause of us experiencing institutionalisation. We are reminded in 2021 of how inherently abusive institutions are in terms of the shambolic mother and baby homes report. As we fight to reckon fully with our institutional past, we must also end modern institutions, including nursing homes, psychiatric care facilities, long-term residential care facilities and direct provision and homelessness hubs. Institutionalisation makes disabled women particularly vulnerable. At their best, institutions continue to segregate disabled people and deny us our agency. We also must recognise that private homes can be institutionalised settings when no real option for independent living exists. Disabled women, in particular older disabled women, need to have choice in regard to where and with whom they live. Moreover, disabled women need autonomy over all decisions concerning their lives, including autonomy over their finances. Independent living requires appropriate, secure and accessible housing, but it also requires a rights-based approach to services, including personal assistant services. Disabled people are the only people still denied legal capacity in Ireland. It is imperative that disabled women's autonomy is respected so that we are supported to make decisions in all aspects of our lives, be that in regard to reproduction, where and with whom we live or medical treatment.

Today, we task the committee with the following four issues: the allocation of funds to DPOs and women's organisations to ensure the involvement of disabled women in these organisations; to ensure all institutions are relegated to the past where they belong and disabled people are supported to live where and with whom they choose; to ensure all gender-based supports and services are disability-proofed, including gender-based violence supports; and ensure disabled people are not confined to living in poverty through the provision of a non-means-tested disability payment and access to supports and services they need in their lives.

We are here today at the end of the #DisabilityIsntADirtyWord campaign. The campaign is a response to the language and approaches to disability which are patronising and distance us from our rights. We need to move away from terminology that does not serve disabled people. There is no issue that concerns disabled people that does not impact us specifically as disabled women and non-binary people. There is no issue that impacts women that does not impact us specifically as disabled women. As disabled women, we need to be involved in the conversations at every stage of the policymaking on disability and gender issues.

Chairman

I thank Ms Ní Fhlatharta, Ms Lane, Ms McGovern, Ms Bonnie and Ms Hassett for their contributions, which were thought provoking and challenging in terms of the committee's work as we endeavour to try to improve the lives of people with disabilities.

Members may use their time for questions, comments and answers or they may use their time to make a statement rather than ask questions. I will leave it in their hands. The first questioner is Deputy Tully.

Deputy Pauline Tully

Should I stand?

Chairman

It is a matter for the Deputy.

Deputy Pauline Tully

In committees, we remain seated but in the Dáil Chamber we usually stand. Good morning to everybody. I wish a happy international women's week to all of our speakers, female members of the committee and females watching the proceedings. It is worth noting that this committee is a majority female committee, but that is not true of all of the committees in the Oireachtas, unfortunately. Some committees have a reasonable number of women. As members can take up positions on more than one committee, many women take up positions on several committees, but not all committees have female representation. This is not reflective of the Oireachtas make-up, where 22.5% of Deputies are female. None of this reflects people with disabilities because the number of disabled people who are elected to the Oireachtas is extremely low, a point made today, including in regard to our councils. This needs to be addressed.

This committee has an important task. It was formed to oversee the implementation of the United Nations Convention on the Rights of Persons with Disabilities. As mentioned, it is relevant across all Departments and so we should be holding all Departments to account. We must ensure issues that affect women and disabled people are dealt with, which combined add up to a large amount of discrimination. As mentioned by Ms McGovern and others, it is important there is input into this committee by people with the lived experience of a disability. We must ensure that happens in the case of individuals and DPOs. One of my questions is around how best we can do that going forward. The committee has done some outreach work and received some submissions from people in those positions, but we need to ensure we do that in the best way possible.

The past year has been taken up by Covid, which has adversely affected women more than men and disabled people more than able-bodied people. It has led to women having additional chores within the household and in terms of childcare, elderly care and home schooling. As mentioned, women in employment and people with disabilities in employment are frequently employed on a part-time rather than full-time basis and in less secure employment. Also, the majority of those on the front-line in our health and essential services are women and they have been adversely affected by Covid. My prediction is there will be a widening of the gender pay gap and this needs to be tackled as we come out of Covid, it is hoped in the next few months with the roll-out of vaccines.

I am concerned about the statistics provided today about gender violence and the statement that disabled people, disabled women and women with a health problem are more susceptible to violence from a partner. It is very concerning. It is more concerning that the supports are not as available to women with a disability as they are to other women. I am concerned also about the witnesses' commentary that screening programmes such as BreastCheck and CervicalCheck are not available, as they should be, to all women. This also needs to be addressed.

Another issue which I believe is very important is the lack of independent living available, which many of the witnesses referenced. Our Departments, councils and the HSE have a job to do to ensure all adults have choice in regard to where they live and that the proper supports, including personal assistant hours and so forth, are put in place to ensure that happens.

I have a couple of questions, one of which I mentioned earlier in regard to engagement by disabled women, disabled people and DPOs with this committee and how best we can improve that. Another issue arising out of what many of the witnesses have talked about today is the collection of data and the need to ensure those data are broken down by gender. If the State does not have sufficient quality data on disabled women, how can that position be measured and responded to effectively? How can that be improved?

Ms Maria Ní Fhlatharta

On the issue of disabled persons' organisations and ensuring that disabled voices are heard in policymaking, something that has been particularly significant in our community is the longevity and success of those organisations. There are incredible disabled persons' organisations operating at local and national levels that are entirely unsupported by the Government. Predominantly when we fund civil society, we do not fund disabled persons' organisations, or at least not to the same extent. We prioritise organisations that are often led by service providers which have a direct conflict of interest. This is probably most notable in the case of the National Platform of Self-Advocates, which is made up of revolutionary advocates who should be celebrated and supported but have spent the last three years fighting from month to month to exist. The fact that core funding does not exist for them in that circumstance massively disadvantages people with an intellectual disability. We are missing out on a key voice in policymaking. Grassroots activism requires access to supports, so one could require interpretation, personal assistant support and so on. When they do not exist it is hard for disabled people to be involved at every level.

Chairman

Does anybody wish to respond on data?

Ms Selina Bonnie

I echo what Ms Ní Fhlatharta has said. I will also point out another issue. If one looks at the pre-legislative scrutiny of the assisted human reproduction Bill and goes through the list of witnesses and the 31 written submissions, one sees that process should have been equality-proofed. Somebody should have looked at that and realised that parts of society that this strongly affects did not have a voice. Any Dáil or committee work that is undergoing pre-legislative scrutiny needs to be equality-proofed to ensure all relevant voices are heard. If they are absent, go out and find the right people with the lived experience, whether a disabled persons' organisation or an LGBTQ organisation. The process for this type of work must be equality-proofed.

Senator Fiona O'Loughlin

I thank the Chair for organising this meeting. It is notable and important that during international women's week we have the opportunity to speak to women with a disability. The point was well made in some of the submissions that some women prefer to be called "disabled women". Whichever term a person chooses to describe himself or herself is the right way to approach it.

The theme of this year's International Women's Day is "Choose to Challenge". We had a two-hour debate in the Seanad yesterday on how we choose to challenge and what we need to choose to challenge in society, particularly from a gender perspective. In the opening statements we heard today we were made all the more conscious of the challenges facing women.

Starting a conversation on what any one of us can do to challenge the status quo and ensure gender balance across all aspects of society is important. It is also important to celebrate women in their diversity and, today, to place an emphasis on women with disabilities and ensure their voice is heard and their needs are met. There are many different experiences of being a woman in Ireland and that has to be addressed not just yesterday or this week but throughout the year. It is time for positive measures for women with disabilities to ensure they and the witnesses, those they represent and their peers have full human rights and fundamental freedoms on an equal basis with everybody else.

As a woman, I believe I must help to make sure the fight against inequality breaks down barriers for all women, not just some. The slogan "Nothing about us without us", which informed the approach we took today and has come up in hearings, has to be at the centre of every discussion about women and disabilities. On Twitter during the week, it was interesting to see the question put as to why people use the term "disability" and to look at some of the responses. They included the fact that acknowledging a disability has enabled a particular respondent to transcend her illness. Another woman realised that to try to hide or to be ashamed of her disability serves to uphold the ableist status quo. All of that is important. One lady replied that she was part of a magnificent, unique group of disabled women with a cultural identity to celebrate with pride.

I will put a few questions to the witnesses. I was concerned to hear from the National Women's Council of Ireland about barriers that women with disabilities experience in accessing health screening services, resulting in a lower take-up of breast and cervical cancer screenings. I would like to hear more about that in terms of any data available.

The incidence of violence against women with disabilities is particularly high. That is shocking. Perhaps the witnesses could help the committee with how we need to deal with that.

Equality budgeting has been expanded across Government to broaden the scope to other dimensions of equality, including disability. The initial report notes that the National Women's Council of Ireland is involved in this work. Will the witnesses tell us a bit more about that?

Many disabled women gave testament to significant levels of exclusion and isolation from women's groups and the women's sector as a whole. That was sad and there must be a way we could help support those women.

Ms Amy Hassett

To make a follow-up point on the comments, in our experience it has been transformative for disabled women to identify as disabled. I highlight that because it is powerful to define oneself in the terminology that suits best. It is most moving for us in Disabled Women Ireland to have a lot of people come forward and say they now feel comfortable identifying as disabled and they can better take up and fight for their rights now that they have this terminology. I mention that because it is really important.

Also mentioned was the importance of women breaking down barriers for other women. That is incredibly important. It is important for us, as disabled women and as women, and also for everyone here to acknowledge that there are many different aspects of identity, including gender, age, whether somebody is LGBTQ, black or from a different ethnic minority, or a Traveller, Roma, transgender or from a different socioeconomic background. I want to highlight that as disabled persons' organisations and other organisations requesting support, we need to make sure we do that in a way that is inclusive of the diversity of experience that people have. It is important that we are focusing on women with disabilities today but we need to use that as a springboard for including people with other identities and to step up and pull up people behind us as we go.

My final point relates to the involvement of disabled women in women's organisations. We stated in our submission that this is a resource issue. Disabled persons' organisations are facing a massive resource issue. Ms Ní Fhlatharta spoke about the national platform, which is the most concerning issue we have in the disabled persons' organisations.

Access is difficult because it takes resources to make things accessible. Sign language interpretation costs money, having a Zoom account that has closed captioning is expensive and so on. When we go back to doing things in the physical world, more barriers will emerge again. We have to be empathetic and compassionate and understand that there are limited resources but if there are individuals who feel they are not being included in the broader conversation, we need to see if they are being given the resources and support they need to be included. We are all trying to do our best with the resources that we have but we should not have to make decisions and choose one or the other.

Ms Maureen McGovern

I wish to respond to the two most recent contributions. In terms of living locally, as a disabled feminist, it has been really difficult for me and for other disabled women in my local area to participate. There are many reasons for this, one of which is a lack of resources. Some people might need transport to get somewhere, even though it might be in their local area. Personal assistants are also an issue, as are other resources like sign language interpreters. Public buses, for example, only have room for one disabled person which causes difficulties. If one is at bus stop number two, one might not get on because there was a disabled person at bus stop number one or a person with a pram. These issues cause great difficulty for people.

Attitudes are also an issue. Women are often seen as the ones who take care of disabled people and that is an attitude that we must overcome and negotiate. In terms of data on violence against disabled women, we do not have enough. Resources are needed for a research project to be conducted across the length and breadth of Ireland to find out where there is violence and why it is happening. We do not really know what is happening to disabled women in very rural areas, for example. Violence might also mean my personal assistant or carer taking away my wheelchair until he or she is ready to bring it back. We really have to build the capacity of disabled women to identify violence. Often disabled women are afraid that their services will be taken away if they complain but that is not acceptable any more. I have a right to services and a right to participate in society at every level. It is really important that disabled women at a local and national level are resourced to support themselves.

Chairman

We are under time pressure so we must stick rigidly to the three-minute limit. I want to afford everybody the opportunity to speak. Deputy Higgins, who is substituting for Deputy Phelan, is next.

Deputy Emer Higgins

I thank all of our witnesses for their attendance today. They have given compelling, passionate and personal statements and for me, the lived experience is the best tool when it comes to shaping and updating public policy. I thank them all for the role they are playing in doing that. I also wish all of the witnesses and my colleagues a happy international women's week.

I was struck by a comment made by Ms McGovern about feeling under-represented at a political level. I assure her and all of the witnesses that all of us in this Chamber, from all sides of the political divide, are united in this committee when it comes to progressing issues for disabled people. I give them that assurance of our support and willingness to build links with them.

We are pressed for time and I would like to hear more from the witnesses. I have a number of questions related to specific points they have raised. Ms Bonnie, with whom I have worked on South Dublin County Council and who is a force to be reckoned with, spoke about the need to expand the assisted human reproduction Bill to cater for disabled people. I would love to hear a little more about what we could do, in practical terms, in that regard. She also spoke about the low screening uptake and barriers to accessing screening, for example, the lack of hoists. Beyond the provision of hoists, which I agree should be a basic requirement, is there anything else we could do to improve screening services for disabled people?

Ms McGovern spoke about violence, including sexual violence, against disabled women and argued that we should have some targeted initiatives to respond to and tackle that issue. I ask her to outline her ideas on what we should be including in our frameworks going forward. On a similar theme, Ms Hassett mentioned that not all gender-based services are accessible to people with disabilities and to disabled women in particular. I ask her to suggest a couple of remedies that would rectify that situation and improve accessibility. She also spoke about barriers to work. In December 2020, this committee celebrated the International Day of Persons with Disabilities and part of the theme we chose for that day was ability. A number of organisations appeared before the committee to share their experience of what it is like for disabled people in the workplace. This is an issue of which we are all cognisant and on which we really want to make an impact. In a previous role, before I was elected as a Deputy, I worked in that area on a couple of programmes. I tried to make sure the company I worked for was a diverse and inclusive employer that gave people of all abilities access to employment opportunities.

The remote working strategy recently published by the Tánaiste is going to be of huge benefit in terms of equipping people to ask for the opportunity to work from home. I ask the witnesses to respond to those questions. Ms Ní Fhlatharta made some very interesting points about scholarships and I am pleased to hear they are having an impact.

Ms Selina Bonnie

It is lovely to see Deputy Higgins and I thank her for her very kind words. I am very proud to work for such a wonderful local authority. On the question of health screening and access to same, the problem is that quantitative data have not been collected. This is an area that must be addressed so that we really know what we are dealing with. From a qualitative point of view, the stories I could tell the committee that I have heard from other disabled women are shocking. Considering the number of cases that have gone through the courts already in this area of life, one would think we would be a bit more careful about including and meeting the needs of women in Ireland, regardless of their ability.

On the Bill, there are key concerns relating to a number of different heads of Bill, particularly the one related to the welfare of the child. Judging that can be very subjective. What does one understand by quality of life or welfare? I had personal experience many years ago of being refused assistance unless the professional could be guaranteed that I would not have a disabled child. That is just one example of the very broad issues that exist. The voices of those upon whom legislation impacts need to be included in the process.

On the issue of remote working, the idea itself is not new. The disabled community has been promoting remote working as a way of enabling people to access employment for decades but it took a global pandemic to show the world that we know what we are talking about. If one looks at it from a wider perspective, when we talk about value for money, we need to be learning from the lived experience of the people to whom we want to deliver services. That is the only way we can be guaranteed that we achieve value for money. We think we are doing the right thing but we are not using lived experience to shape our decisions. That is my short answer.

Chairman

I understand it is frustrating for our witnesses when they have so much to contribute to the debate but we need to reflect everyone's concerns. Six minutes have elapsed. I think Ms Hassett wishes to come back in later.

Deputy Neasa Hourigan

I thank everyone for their time today. I will speak quickly so that they have as much time as possibly afterwards. I echo everyone's calls about making this conversation and the work of the committee as inclusive as possible and that it would reflect not only the voices of disabled women or women with disability, but also the diverse community within that, Mincéirí, those in direct provision and those who are transgender. I have some very specific questions. We spoke a little about assisted human reproduction Bill. I am interested in the specific concerns around the review of the termination Act and its impact on women with disability or disabled women in areas such as the three-day waiting period and the possibility that a woman would have to travel twice, for example. We have just heard how travel and public transport can be a barrier. The restrictive gestational limits can also require travel. What are the witnesses' views on the review of the Act?

We spoke a little about autonomy and legal capacity today. The issue is mentioned in some of the submissions to today's meeting, including the issue around parental capacity assessments. In February, Ms Justice Mary Laffoy was before the Joint Committee on Health to examine adult safeguarding. That is something that is playing out at the moment. I am interested in any of the witnesses' comments or thoughts on that scheme as proposed.

Chairman

I appreciate the Deputy's brevity.

Ms Maria Ní Fhlatharta

I will touch on both legal capacity and abortion and will try to do so quite quickly. On gender-based services, including abortion, the services, laws and policies seem surprised that disabled people exist once they are commenced, despite our having fed into the legislative process a lot, particularly around the abortion Act. All these things are designed around the idea that whoever will present for a service will be a non-disabled, likely middle class, likely a white woman. That is not the demographic of the people who rely on these services. Services are shocked when someone turns up and requires a hoist or when all these barriers are put in place. If something is designed with disability and disabled women in mind from the outset, if that approach is at the core and disabled people's voices are consulted, the result is a system that does not just benefit disabled people but which will be more generally accessible to everyone. It is particularly clear in the abortion Act. We were very clear when the termination of pregnancy Bill was going through the Dáil, as were Inclusion Ireland and the Disability Federation and other organisations, that the three-day wait period would create a barrier, as would strong gestational limits and that we did not know how it would interact with legal capacity and that would be a barrier. Ultimately, the only time disability was mentioned was when it concerned potential foetal screening and selection, completely ignoring the lived reality of disabled women. The exact same thing happened with the assisted human reproduction Act and absolutely everything that pertained to reproduction, parenting and disability.

On legal capacity and adult safeguarding, safeguarding is important but currently the system completely denies the agency and rights of disabled people and particularly disabled women. While we need to protect everyone from abuse, the current system ignores the will and preferences of people and will ultimately always resort to substitute decision making. The Assisted Decision-Making (Capacity) Act is a welcome improvement but it still has a provision that can and will deny disabled people their decision-making rights. We need to move towards the full supported decision-making mechanism. There is so much talk about choice on International Women's Day but we completely fail to recognise the intricate and invasive ways that disabled women's choices are restricted, including in this really crude legal framework.

Ms Amy Hassett

On Deputy Higgins's comments, I will ask Ms Ní Fhlatharta or Ms Bonnie to respond on remedies for gender-based services as they know a great deal more than I do. It is important.

On barriers to work, we are delighted to see remote working strategies and more flexible working styles are being incorporated. It is really important that does not become a replacement for making workplaces accessible to disabled people. There cannot be a system where people are told they are able to work remotely so they should stay at home, so that employers do not have to worry about making workplaces accessible to use. The same goes for educational systems. The remote aspect of education in the last year has been problematic for disabled people but also a welcome change. We would love to see some of that continue. It would have opened many doors for disabled people had this come in ten years ago. We worry a little about that.

There has been a change to the scholarship system so that now students, such as myself, who are recipients of scholarships can still get disability allowance. It is a really welcome change but it is important that we remember that it is an example of the holes that disabled people can get trapped in. This is one that has been fixed but we need to bear in mind that there are an awful lot more out there and there should be vigilance on that. We need to be given space to raise the issues we have.

Senator Ivana Bacik

I welcome all our witnesses and wish everyone a happy International Women's Day. I know we all welcome the opportunity to have a public hearing from such a great array of witnesses. It is nice for us this week to have all the witnesses before us be women. Most of us in the Chamber are women and this committee has a majority of women members but as others have said, unfortunately, that is not the norm across the Oireachtas and the Dáil still has a very low number of women Deputies, 36 Deputies which is 22.5%. The Seanad is much better with 40%, or 24 out of 60, which is a huge improvement but a long way to go. Ireland still languishes at 101st place in world rankings of women in parliaments. The message for International Women's Day and this week, "nothing about us without us", is very important for women and, as all the witnesses have said so eloquently, also for women with disabilities or disabled women. We are very grateful to everyone for coming in and for speaking to us today and sharing such an array of experiences, and providing us with such insights into their own lived experiences and many of those they represent.

As someone who was involved in pro-choice campaigns for a long time, it was brilliant for the repeal the eighth campaign in 2018 to have so many important voices of women with disabilities or disabled women coming to the fore on the pro-repeal side. It was most interesting to hear their thoughts on the reproductive justice side.

My questions are on two other issues. Do any of the witnesses have a view they wish to share with the committee on the institutionalisation of women with disabilities? Some of the speakers have touched on how Ireland has had a shameful history of incarceration, of populations who are "disruptive" or seen-as disruptive to the State. We have seen that history with mother and baby homes, Magdalen institutions and so on. However, I am very conscious that there are complex issues around women's choices. Last year, I worked closely with some residents in the Sisters of Charity-run home, St. Mary's home in Telford in St. Vincent's, Dublin 4. Many here will be aware of the situation, which was very public, where the Sisters of Charity were closing the home to the great distress of many of those women within it who had known no other home.

The complexity of institutionalisation, which means it is not always experienced negatively by those who are institutionalised, is an issue on which I would like the witnesses to comment.

Finally, I have a question on the new Government policy and the great expansion of the disability remit in its move into the Department of Children, Equality, Disability, Integration and Youth. What is the witnesses' view on that? Do they see it as a positive development and how will it impact on their lives and the lives of the women they represent?

Ms Maria Ní Fhlatharta

The issue of institutionalisation more broadly is incredibly nuanced. What happened to the women in the St. Mary's home is entirely not okay. We need to be careful to bear in mind two issues in this regard. One is ensuring that no one else enters an institution, because the system itself is very exploitative. However, we also have to be mindful of our duty of care to those who are currently experiencing the system of institutions and the need to ensure that, as we move away from our institutional past, it is done in a way that puts their needs, will and preferences to the fore. It is crucial that no one is forced into a position with which they are uncomfortable. It is an incredibly difficult issue for people. Many of the women in the system experienced institutionalisation their entire lives. They had no idea what it was to live in a family or community and the idea of doing so at that point in their lives was impossible. Obviously, their voices are the most important things within the system. That was not how it played out but it is how it should have been.

That being said, we need to be very careful that we do not repeat the mistakes of the past and that no one else enters an institution. We have to resist newer forms of institutions. As the Senator acknowledged, we have seen many different forms of institutions in our history and in our present. While we continue to default to the institutional model, whether that be in the form of smaller, more nicely named institutions or institutions for other groups, such as those in direct provision or in homelessness hubs, we need to be mindful that full community and independent living is the solution and the goal.

Ms Selina Bonnie

We talk about institutions but there is also the issue of young disabled people being involuntarily incarcerated in homes for older people because they have not been given access to the necessary personal assistance hours or accessible housing. There are quite a lot of younger disabled people involuntarily incarcerated in those situations in the Ireland of today. That is one issue that needs to be addressed. Another issue is that there are many people in hospital who are holding hospital beds for, perhaps, five, six or seven months because they will not be released from that hospital until either their home is adapted or they have been allocated personal assistance hours. It is not just the significant issue of the long-term institutions; in today's Ireland, we also have an issue of almost institutionalising people anew in newer settings.

Deputy Violet-Anne Wynne

I welcome each of the contributors and thank them for attending. I wish a happy International Women's Day, or international women's week, to the witnesses, my colleagues and everybody listening. This meeting in itself is hugely important as a means of recognising the importance of a gender perspective on disability and understanding how the real inequalities for disabled women affect their daily life. There is a specific piece of work to be done in this regard and actions certainly are long overdue. It is great to get a real insight and perspective from the witnesses on these matters.

I find it deeply worrying and concerning that women with disabilities in Ireland are more likely to experience violence, as we have talked about here today, and that a significant proportion of gender-based services in Ireland are not accessible to disabled women. I find it hard to believe in this day and age that such services are not disability-proofed. More important is the question of how we address that issue. Many of these services are struggling from year to year on the funding they get. I wonder whether it is specifically and only about funding. It is not an excuse but, in reality, if that is the issue, then we need to demand that services are funded sufficiently to ensure they are disability-proofed. Do any of the witnesses have knowledge of what service providers are saying in that respect? Is the funding aspect the largest barrier or is there something else in tandem such as training elements that are missing and required for staff? That is my first question.

The lack of access to transport is something on which I would like to focus. In my constituency of Clare, many people with disabilities who live in rural areas have relied on a service that was provided by Clare Accessible Transport whereby the disabled person could telephone to request to be picked up at a specific location. Unfortunately, the service was lost last year as the Covid crisis hit. I am seeking further information from the Minister for Transport on the matter and as to whether accessibility clauses should be included in tendering processes. The important point I want to make is that sometimes when services are in place and working well, they are, unfortunately, cut or replaced. That is not good enough. Do the witnesses consider that these issues are occurring because people, particularly women, are an afterthought in the bigger plans for transport? Do they think the Minister needs to be more hands-on in this regard or is it an issue with tendering processes and making sure that accessibility clauses are included?

I thank the witnesses for their contributions regarding the institutionalisation of women. A number of people in Clare aged under 65 are in nursing homes. The witnesses have responded on the broader issue but is there something that can be done about those people who are in nursing homes at the present time to facilitate their move into a more residential setting or whatever option they would choose for themselves?

As we are under a time constraint, I will conclude by asking the opinion of the witnesses on the State's initial draft report on the implementation of the UNCRPD and how it can be improved to ensure account is taken of the rights of women with disabilities. I finish by noting the words of Maya Angelou: "... [We] may encounter many defeats, but ... [we] must not be defeated."

Ms Amy Hassett

I will make just a few brief points because the other witnesses are greater experts than I in these areas. In speaking with our membership and getting feedback on the draft State report, which we have been doing over the past week or two, the first point I would make is that there are massive concerns around things that are missing and absent and also about the way certain things are presented and whether it reflects the lived experience of disabled people. Shadow reports will be written, in which process we will participate. We certainly have concerns in this regard.

I agree with the Deputy that women are an afterthought in transport considerations. This is a global problem. It is known in every single aspect of transport that women are not considered. In terms of designing transport for cities, the focus on people working in full-time paid jobs is an example of this.

They tend to be more male based. They tend to make transport trips in and out of the city whereas women make more lateral movements around cities. The majority of transport systems, at least in Dublin, are focused on getting in and out of the city. That is the exact same for disabled women in that it is an afterthought.

With regard to support services for women, one comment made by our membership is that the physical services are not accessible but also the lack of disability understanding training for staff is a massive concern.

Chairman

Ms McGovern wants to come in but we will move on to the next speaker. I will call her after Deputy Jennifer Murnane O'Connor has spoken.

Deputy Jennifer Murnane O'Connor

I thank the witnesses also for their very powerful words. The one thing all of us on this committee have to make sure we do is to listen and make policies to help. That is our mission. It is something we need to do.

I wish everyone a happy International Women's Week. It is important. The first thing that hit me when I read the statements was the violence against disabled women. We need to ask Tusla to provide a categorised database to show disabled women's experience. Funding has a major part to play in that but we need to do that because it is very important.

When we speak about political life we must highlight that there are not enough representatives in elected office. What can we do to encourage that and engage more? One of the witnesses might come back to me on that.

All of us are hearing about BreastCheck and CervicalCheck. It is very important that disabled women do not have to ask for supports such as a hoist. It should be standard. Working with the HSE it is very important that there is communication and information. That should be available. We do not want women to say that was not available to them and describe how bad they felt. That is something on which we need to work. Those are issues we need to address.

I refer to the absence of disabled voices. We need to include all voices and listen, particularly to what women are saying, but I was sad to hear Ms McGovern say that when people are not listening it can affect mental health. She might come back to me on mental health and the way that has impacted the witnesses. I know it has been hard but Covid-19 in particular has been extremely hard on people's mental health. The witnesses might come back to me on that.

When we are launching programmes we need to get more women involved. It is very important that with policies and us working as two different groups we learn and make sure that we deliver on policies that will affect women.

Do the witnesses believe it would be helpful to have a disabled person at the decision making level in all local government? I believe that will be very important and it is something we need to examine. I was a councillor before I became a Senator and a Deputy and whether it was working through local grants, housing adaptation grants or whatever grants were available, it was payments being means tested. That was brought up today and I would be very worried about that. No payments should be means tested. That is an issue we need to address.

One of the statements that summed everything up was that "disabled women can fully realise their social, cultural, political and economic rights." That is what we have to do here. All of us have a duty of care and it is something on which I believe we need to deliver. I again thank the witnesses. The meeting, and the presentations, were excellent. They might come back to me with some answers.

Chairman

I thank Deputy Murnane O'Connor. Does Ms McGovern want to come in?

Ms Maureen McGovern

I do. I will give the members a mishmash because I am hearing lots of stuff. I would love to be among them having a cup of tea and a chat because the lived experience of disabled women is very important.

On the question of institutionalisation, please do not forget the disabled women who were institutionalised in the 1940s, 1950s and 1960s. I was one of those women. I was institutionalised for 12 years and it was very difficult to come into an open society. We need to look after those women also.

I would welcome the idea of disabled people being on every single board but it is very important that resources are put in because it is all about money. We live in a society that rejects us so we need to ensure that funding is put in place.

With regard to mental health, because of attitudinal reasons and our built environment it was very difficult for me as a disabled woman, and for other disabled women, to participate fully in any part of society. When one cannot participate perhaps due to access or attitudinal reasons, lack of resources or whatever the issue might be, that comes back on one like a mirror. I felt that I was really not wanted in my society and when that is coming back to one all the time, that is difficult to deal with at times. It is about ensuring that we build an environment that is fully accessible to every single person within our land. That is important. Universal access is very important.

I will make one more point around hoists. I experienced this issue quite recently. I was looking for a hoist to attend an appointment. Although I had telephoned the hospital to say that I needed a hoist there was no hoist to meet me. I had to leave the hospital to get another appointment when a hoist was available. I should not have to do that. No disabled woman should have to do that.

Chairman

We will now go to Senator Mary Seery Kearney.

Senator Mary Seery Kearney

I thank all the witnesses very much. I am very taken by Ms McGovern's contribution. I come from a background of being a privacy lawyer. One of the aspects of the general data protection regulation, GDPR, was privacy by design; everything has to be privacy by design. What I am taking from this morning's meeting is that we should have ability by design. Everything we do should consider the limitations in how we are providing a service, how we can overcome those limitations and make sure we have people advising who experience the limitations and are in a position to comment on that.

I thank all the witnesses for their contributions and wish all of them a very happy international women's week. I am the Fine Gael spokesperson on disability and I must confess that I have taken the witnesses' opening statements as a to-do list. I would welcome further engagement on that outside of this meeting by way of follow-up.

To give the witnesses a brief outline of my actions as I have been sitting here listening to them and having read their statements in preparation for today's meeting, I noted that clarification was required from the Minister, Deputy Humphreys, on the provisions, the cards and the additional points the witnesses made. I have sent a request to her office.

Yesterday, for International Women's Day, I raised a Commencement matter in the Seanad on intimate partner violence and the increasing rates of domestic violence because all the January reports show that. The Minister, Deputy Roderic O'Gorman, stated in reply that they were currently conducting an audit of the services and that included an assurance of diversity in the provision of domestic violence supports. My focus, I confess, was very much on trans and non-binary women. I have been thinking that it did not occur to me to specifically ask about disability. As I was sitting here, I emailed the Minister for Justice asking whether she has engaged on this and saying that, if not, she needs to engage directly with those people who are contributing and speaking so passionately this morning. I asked her to make sure that she hears their perspectives. Rather than me representing the witnesses they should get to speak for themselves.

My home constituency is Dublin South-Central so I am particularly taken by Ms McGovern's statement that Ballyfermot-Chapelizod has the highest proportion of people with disabilities living in an urban setting. I would like to hear more on that.

I have been advocating with various Ministers in various forms on hidden disabilities and the lack of provision for that also. I have particularly advocated on the shortcomings in the primary medical certificate, the criteria for entitlement to that and what flows from that with regard to disabled drivers, disabled passengers and how there is a limitation in that respect. One particular advocate, Gráinne Leach, whom I know personally is on to me regularly. I see one of the witnesses nodding. Gráinne sent me an email this morning saying she had already been on to them to make sure that her position was outlined. She is without one of her arms but does not qualify under the criteria, yet lives a life that is very limiting and does not have access to any funding that flows from that.

My statement for International Women's Day yesterday in the Seanad was dedicated to the draft assisted human reproduction Bill. I am a member of the AHR coalition. I see significant shortcomings in and have concerns around the draft Bill and I raised a number of them yesterday. Among these are making sure that persons with a disability have a say in influencing and making sure that the provisions within the Bill also meet their needs because there are other groups where they do not. I would welcome hearing more from Ms Bonnie and engaging with her; if Ms Bonnie is not already in the coalition, I urge her to make that contact. I would be happy to do that.

Lastly, I was taken by the reference to "institutions". We have a picture in our head of what that looks like, but what we do not have and what did not come home to me was the fact that one's own home can be an institution in how one is treated within it. I have had much engagement with Colin McAndrew of Global Citizens. Mr. McAndrew talks about the urban built environment and the experience and accessibility within that. I would welcome hearing more about what we could do, how we can assist and how, as legislators, we should respond.

Apologies, there was a great deal there. I still have an even longer to-do list to go.

Chairman

Who wants to take that question? Ms McGovern was mentioned in it. Does she want to respond?

Ms Maureen McGovern

To respond to the point about Ireland having the highest percentage of people with a disability in an urban setting, Ballyfermot-Chapelizod, as the committee will be aware, is very disadvantaged. That results in people gaining impairments due to drugs and violence. People will always gain an impairment as a result of poor living conditions. We have actually 21% - I made a wrong assumption there, it is actually a bit higher.

Chairman

Ms Bonnie wants to contribute. We will take her next after Senator Higgins. There are a number of points that Senator Seery Kearney raised that they might respond to privately because there is a volume of information that we would love to get onto the floor from our witnesses in reply to the questions but time is against us. If there are questions that are outstanding, they might liaise directly with the committee or with individual members because it will inform us as we go forward.

Senator Alice-Mary Higgins

I thank the witnesses. I would echo what the Chair said. There are so many questions and so many issues arising that it would be good if we could even get written input on some of them because we are going theme by theme. I would welcome that kind of nuanced expertise and experience around the issues of means testing and how it could be removed, and how the costs of disability should be better recognised. I was struck by the fact that employment opportunities are not only double-glazed but sometimes triple-glazed. On the transfer into remote working, how do we ensure that it is empowering and how do we completely overhaul the approach to reasonable accommodation that we have at present? I would welcome written input on those issues. I am signalling those points because I have many questions as well.

We came into this session knowing that the UN Convention on the Rights of Persons with Disabilities mandated us as a committee to ask how our approach to disability can be gender-proofed but what has come across so strongly from the presentations is that our supports for women in Ireland also need to be disability-proofed.

I was stuck by what Ms McGovern said about violence. Something I care a lot about is coercive control, which was brought in by the Seanad as an offence. I was wondering about the other more insidious and financial abuse of women with a disability, if Ms McGovern wanted to comment on that, and how we could understand or communicate that better. I am also struck by the fact that this can happen in the home and that idea that the home can be an institution, and even a place of institutional abuse.

In terms of the choice in living issue, Ms Ní Fhlatharta already gave a nuanced piece so that we do not have a blunt tool that is only about the numbers in a building but that looks to how we ensure there is choice around how people are living, be it with a community of like-minded people, with friends, with family or alone. Will Ms Ní Fhlatharta comment further around the issue of personal assistants and the difference, for example, between care supports and personal assistants in terms of empowering people in making those choices, empowering people around cultural and political participation, and particularly around empowering people within their family relationships to have more equal family relationships and that fuller relationship piece?

This brings me to what Ms Bonnie was talking about, which I am really interested in and which others have talked around. I will be bringing Ms Bonnie's points back to the reproductive rights group in the Oireachtas because they are really important. Could Ms Bonnie expand further around parental capacity assessments because I have some concern around the way those are applied to women with a disability?

Statistics have been talked about. Any written input is great, but how could our consultations be better designed so that we get input from people? That means thinking about the web accessibility directive but maybe also designing consultations in a better way.

Returning to Ms McGovern on the community level, I refer to that aspect of shaping communities. How do we ensure that it is not only about community supports but about supporting women to shape their communities and culturally participate in them? I am concerned that in the last recession we saw that community supports were really caught. Everything was directed towards jobs and nothing else. How important is it that we build up our community infrastructure from the perspective of women with a disability?

I thank the witnesses for everything. I look forward to a longer conversation over the year to come.

Chairman

Absolutely. Maybe we will go to Ms Bonnie first.

Ms Selina Bonnie

I will try to be brief. First of all, I included my contact details at the back of my statement. If anybody wants to engage with me after this morning about any of the issues, he or she is welcome to contact me.

On parental assessments, what has come to the fore is that mothers with a disability are being set up to fail by the way the system is currently designed and much work needs to be done there. Ms Ní Fhlatharta might be able to speak further on that.

Briefly, the difference between a personal assistance service and a carer is that with a personal assistance service, the person with a disability is the boss. We lead our personal assistant, PA, and the PA works to our direction to do things at the time we choose in the way that we choose whereas with a carer, one does not have that choice and control.

One final point relates to something a few previous speakers raised. On ensuring that services are accessible, under Part 3 of the Disability Act 2005, each public agency should have an appointed access officer. Perhaps it is time for the new Department to engage with and maybe develop a register of all those access officers because I can guarantee there are many agencies that should have them that have not appointed them. The Department should then engage with the individual access officers across the country to encourage them to make their services accessible.

Chairman

We have Ms McGovern and Ms Ní Fhlatharta offering. I will take the next speaker and then call on Ms Ní Fhlatharta and Ms McGovern. We are against the clock and I am anxious that we get everybody in to have their say. I call Deputy Canney.

Deputy Seán Canney

As a male participant in this committee along with the Chair, I am privileged to be in a position to listen to the witnesses this morning. The way that each one of the witnesses presented to us is truly what this committee is about. We have to listen but we also have to take on board what people say.

I have probably 100 questions. Therefore, I will not ask any questions but I will make some comments. First of all, within the Dáil we talk about legislation.

I believe that only one current Oireachtas Member is a person with a disability. That is something we need to change. How do we change it? This committee, with the organisations represented today, has to make sure we make disabilities a very political issue and we need to get people involved in it.

The fact I am a lone ranger sitting here this morning does not discomfort me in any way. To listen to what the witnesses have to say is very important. A number of issues that have arisen during Covid have highlighted the lack of services and the lack of engagement we have had, be it in regard to special needs education or the way primary medical certificates are dealt with at the moment, where assessments are non-existent, and there does not seem to be a way of getting these things done. I like the idea of having access officers within each organisation, and that they do the job they are supposed to be doing and it is not just tokenism, which I sometimes feel these kinds of things can be.

There is a huge body of issues that we have to sort out and we should tackle them one at a time. When my students were doing a big project in class, I would ask them how we eat an elephant, and the answer was that we take it one bite at a time. Today is the one bite at a time that we are all here for. I reassure the witnesses that this committee, since it was set up, has been very much involved in doing things rather than talking about things. There are a lot of things that we need to change, with the help of the organisations here today, and maybe they will lead us in that change. That is what I am offering. As women but also as people who are living with disabilities, their experience is more important than any report I would get from anybody else. What I have heard this morning is just the tip of the iceberg. I look forward to engaging with the witnesses again, whether at the committee or aside from the committee, and I may contact them. Given all the questions that were asked, we could do with a full week to get the answers. We need to make sure that we gain as much information as possible from the witnesses on the issues they have.

I have encountered the issue of means testing and disability supports when people are trying to get a job or trying to improve themselves in my constituency in Galway. People have contacted me when they have an opportunity because, if they go for it, they will lose their disability allowance or something to this effect, which is shambolic given what we are trying to do.

The witnesses are all very brave people but they should never feel they are alone. There is a great committee here to help them. We have attitudes to change and we have to do that with education. We have to make sure that every policy is disability-proofed in every Department. It will take time to do that but a change of attitude is the start of it. I have no questions. I wish all of the witnesses well this week, international women's week. It is important that it is not just about this week and then putting that back up on the shelf again. We have taken it down and we need to make sure we fix it before we put it back up again.

Chairman

I invite Ms Ní Fhlatharta to respond.

Ms Maria Ní Fhlatharta

I will try to wrap up a few issues. On representation, there are 220 Oireachtas Members. The Deputy can tell me there is only one disabled person but I do not believe him. We comprise 13.5% to 25% of the population, depending on what metric is used, so there are more of them here.

In terms of participation, many very creative solutions are being proposed today but the greatest one that will work is properly resourcing, supporting and engaging with disabled persons' organisations. In preparing for today, six people helped to write the submission that Ms Hassett and I made earlier, and 12 other people fed into it. We all have very different disabilities and we come from different areas, and we are able to identify the barriers on that basis. That is where our expertise comes from. That is probably the single most effective way to facilitate participation of disabled people in the political process.

In terms of primary medical certificates and supports, Ms Bonnie did a very good job of detailing why personal assistant, PA, support was different because it kept the person concerned in charge - because it gives agency and autonomy. We also probably need that rights focus in approaching other areas of disability support, and that includes primary medical certificates. What primary medical certificates do is they say that if someone's body fits in the box exactly, they need this support and that support. However, none of our bodies fit in any box exactly. When we are assessing services, it needs to be directed by the disabled person in voicing what they need and what supports they need, and they should be supported from that basis. No tick-box exercise is going to say exactly what I need, what Ms McGovern needs, what Ms Hassett needs or what Ms Bonnie needs.

In terms of parental capacity assessments, I will try to be brief and try not to be angry. In a world where we are currently focusing on people being forced to be apart from their children for completely unreasonable things, parental capacity assessments are a tick-box exercise designed to separate disabled people from their children because we do not trust disabled people to be parents. That is simply it. We do not have a way to say there is no risk and because we inherently see disabled people as a risk, and we do not actually provide people with the support to parent; that is all parental capacity assessments can see. To everyone who is a parent on the committee, I guarantee they would fail this. We do not ask any other parents, when their child is born, how to raise a teenager. We need to stop looking at disabled parents as a danger and start seeing what measures we can have to support them.

Chairman

Thank you. I call Deputy Cairns.

Deputy Holly Cairns

Happy international women's week to everybody. I thank all of the witnesses for sharing their lived experiences with us. Regrettably, we know that disabled women and girls face multiple and accumulating discriminations. Most worrying are the examples the witnesses have given around sexual violence and the inability to access domestic violence supports, access to medical screening and healthcare, and dignified independent living conditions. These public services should be available to all, regardless of gender, age, ethnicity or disability.

To make the best use of the short time we have, I ask the witnesses to tell us one concrete intervention, which would make the biggest difference to the lives of girls and women with disabilities, that they would recommend, so we can do everything to make that happen through this committee and through the relevant Ministers and their officials, who we can pursue consistently until there is progress. We need this committee to have an impact. I would love to hear from all of the witnesses what we should be doing most urgently.

Chairman

I invite Ms McGovern to come in on that.

Ms Maureen McGovern

To make a statement, I am proud to be a disabled person. I live with an impairment and my disability is my barrier. I just wanted to mention that first. I do not want to change in regard to my impairment.

In regard to capacity for disabled women at a local level, we need support and resources in order that we can build the capacity to be leaders within our community, which is very important. Those resources would obviously be extra funding for PAs and extra funding for equipment in order for disabled women to actually participate. I will certainly leave my contact details because I would have an awful lot to say about how agencies within local communities can engage better with disabled women.

Chairman

I see Ms Bonnie wishes to come in.

Ms Selina Bonnie

Yes, I have a few points to make. Please value our lived experience, stop assuming that our needs are special and recognise us as innovators. Disabled people navigate the world having to constantly problem solve and innovate. People should utilise that quality, experience and ability. Stop presuming that we are vulnerable purely because we are disabled people.

Senator Erin McGreehan

I thank all the witnesses and wish them all a very happy international women's week. I feel blown away and emotional following all of the contributions, which have highlighted why this committee is so important and how it can make issues visible. Visibility is the problem. For too long, the needs of people with difference in this country have been invisible. I have learned so much from all the witnesses this morning. I feel incredibly hurt and have been upset by some of the comments because of the impact on our guests' basic human rights to be parents, to be women, to have reproductive rights, to have sexual rights and to be who they are. The theme of today's meeting was equality and equity. The equity part is really important to me because it is about recognising difference, recognising difference in us all, and appreciating and celebrating differences but putting things in place that make those differences null and void and makes us all achieve what we need to achieve.

Many really good questions have been asked and I will not go back over them but I do not believe the disability allowance issues have been dealt with. There is clearly a huge issue in the system when 42% of applications are disallowed but 70% of those are granted on appeal. Why are the applications granted after initially being disallowed? To me, turning down applications proves that there is a serious lack of procedure and that people are not being listened to. There is always a margin for error but 70% is a huge error.

I thank the witnesses for their contributions as I have gained so much from them. It is about getting access, transport, employment, education and healthcare and to have a society where we can all enjoy this country and families to the best of our abilities.

Ms Amy Hassett

I am going to do a whistle-stop tour of some of the things about which the last six people have spoken. I could give a long reply but I will not. First, we could have a really involved conversation about the disability allowance. I encourage the committee to engage with us because we have spoken about the allowance a lot recently. Indeed, the fact that 70% of the appeals go through turns my stomach. I am one of these people who has been turned down twice for the allowance. I was successful once on appeal and unsuccessful the second time but for the same reason that Catherine Gallagher has experienced problems. What I can tell the committee from my own experience is that the application process does not capture the lived experience of disability. I could give the committee ten more points about the allowance but will simply encourage members to engage with us because we can provide them with systematic analysis on the vagaries of that system.

As we emerge from Covid, we are, if we are being realistic, about to go into an economic downturn. I want to highlight that to members because those who suffer the most in economic downturns are women and disabled people, plus other individuals of minority backgrounds across the spectrum, but particularly disabled women given the topic of today's debate. We would be really happy to engage with the many different members of this committee who have asked us to on various different issues because we can give more information. The means testing of payments is a significant concern for us.

In terms of representation in public office, in the UK there are specific funding resources for disabled candidates when they run for public office but that does not happen here. That is a major barrier but it is a minor change that we could make. Indeed, there is a lot more that needs to be done regarding this issue.

On engaging people in local government, I would caution for and against having a single disabled person because it is absolutely impossible for any one disabled person to represent the views of all disabled people and experiences are so diverse. For me, as a physically disabled person, it is very difficult to explain what it is like to be neurodiverse or know what reasonable accommodations are appropriate.

My final point is on mental health. Disabled people have found the pandemic incredibly difficult. We were the first to go into quarantine and we will be the last to emerge. In our opening statement, we mentioned our #DisabilityIsntADirtyWord campaign. We ran the campaign because we have been absolutely horrified and heartbroken by the language that is being used about disabled people such as that Covid is not dangerous if one does not have an underlying condition or Covid only affects people who have an underlying condition or are disabled. I wish to point out that Covid will make people disabled. Covid has disproportionately affected people who are disabled. We also know that Covid has killed a disproportionate number of disabled people. So, in terms of mental health, we stress that the mental health system must be overhauled. I urge the committee to please bear in mind that mental health issues are a massive problem, issue and concern for disabled people, particularly disabled women.

Chairman

A whole raft of areas have been covered by members. We have had a fantastic meeting because we are physically here and nearly every member has stayed. Members have busy schedules but they have stayed to listen to the powerful testimony given by the witnesses and heard the challenges. The witnesses have asked us to advocate on their behalf on a whole raft of areas such as resources, violence, isolation, issues concerning the primary medical certificate and the disability allowance scheme, and carers as well, which is something that we, as a committee, must consider very closely and talk to the officials concerned.

The witnesses are a powerful inspiration to us. We will continue to listen to what they are doing and will reflect on what they have advised us to do to get these things made part of Government policy because a massive change is needed. As Chair of this committee, I firmly believe that societal attitudes really need to change, thus enabling everyone to have the best possible life whatever their abilities or disabilities.

I sincerely thank all the witnesses for their contributions today. If there are any points that have not been addressed that were raised by the members, I ask the witnesses to be kind enough to email their views to us because we would appreciate their insight and their view would inform us as we go forward. I sincerely thank the members of the committee for being here this morning and making thought-provoking and excellent contributions. I am really sorry and frustrated that we must adhere to a two-hour timeframe because I would have loved to have given these matters the attention that they deserve and have a longer meeting of up to four hours. I thank the members for their insightfulness and consideration. Most of all, I thank them for allowing a male Chair to chair this meeting this morning. These issues are powerful and this debate has given us food for thought. We all know that we have a desperate pile of work to do to iron out the inequalities that exist for women with disabilities and we will endeavour to do what we can, as a committee. I thank everyone for their contributions.

Our public meeting stands adjourned until the next public meeting that, I think, will take place in two weeks' time but we will liaise with members on the matter.

The joint committee adjourned at 11.30 a.m. sine die.