Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697750915211.pdf (Ireland)
“Self-Advocacy and Women with Disabilities” Disabled Women Ireland Opening Statement to the Joint Oireachtas Committee on Disability Matters 9th March 2022 We welcome the opportunity to participate in today's discussion in regards to transitioning from advocacy to self advocacy.

Self-advocacy is a broad term, encompassing individuals and DPOs advocating for the rights of the disabled community, or the personal advocacy needed to secure individual supports and access.
It is of crucial importance that any disabled person who wishes to engage in self-advocacy is empowered to do so, but is it equally important that this is a choice not an obligation.

Advocacy is a skill which takes time and energy to exercise.

Of late, we have been encountering institutions and systems which prioritise ‘teaching’ people to self-advocate to overcome the obstacles embedded in the system over the decision-makers using their power to remove these obstacles.
This places the burden for access on each individual disabled person's shoulders and does nothing to improve conditions for those coming after them.

If disabled people need to excel at self-advocacy in order to access education, work or any other aspect of life where non- disabled people do not, it becomes just one more facet of our inequality.
Equal opportunity for self-advocacy must be fully and actively expanded to all, including to those living in congregated settings, non-speakers & those who require Decision-Making Support.

Personal advocacy requires information about individual options and rights, accessible and flexible systems to realise personal choices, support to express individual preferences, and freedom from negative consequences.
Disabled people must be empowered and equipped to advocate for their individual interests to ensure their will and preferences are at the centre of all decisions made about their lives, but access to rights cannot be made conditional on a person’s interest in, or skill at, advocacy; support must be available to all who wish to use it and this must include whatever information and support is needed for them to join the DPO(s) of their choice.
Training provided to public sector workers and staff in disability services must also challenge pervasive beliefs that it's up to disabled people to constantly advocate for our own rights and that it's no-one else's “job to speak up” when they see these rights being abused or disregarded.

Community or human rights advocacy is best realised through empowering disabled people to build their own representative organisations, such as DPOs, and campaigning groups.
While individual advocates can bring exceptional expertise to the conversation, individual advocacy cannot replace collective representation in influencing structural change.

Disabled women, girls and other gender-marginalised people need specific representation in order to meaningfully advocate on the issues impacting our lives, as do ethnic minorities and children, which is why the CRPD General Comment 7 specifies an additional obligation to prioritise and capacity build these groups.
In order for gender-representative DPOs to do our work, we need access to information on gendered differences and inequalities across everything from employment, poverty, experience of violence to education, healthcare access and beyond to enable us to identify legislative gaps and causative factors, to propose meaningful solutions and to monitor improvements and the effectiveness of national and local strategies over time.
We also need access to the skills necessary for work on policy development, campaigning, outreach, administration, training and awareness-raising.

Most importantly, we need resources to consult with, mentor and empower our members so that we can ensure that all disabled women are represented and reflected in our work.
The CRPD creates an obligation for States to proactively resource and capacity build self- representative organisations of disabled people, particularly those most excluded from traditional structures of power.
This will require new and creative ways of thinking about how resources are allocated, and recognition that multiply-marginalised disabled people, such as disabled women, have also largely been denied opportunities to become skilled at navigating barriers such as funding applications and corporate governance requirements in order to ensure that this inequality of opportunity is addressed in DPO support.
We must also recognise the numerous other barriers that exist to self-advocacy, particularly for disabled women: limited energy, caring responsibilities, financial barriers, inequality of access to education and skills-building resources, digital literacy restrictions, abusive relationships, inaccessibility of transport and processes, lack of education on rights and - in public advocacy - exposure to sexist and ableist harassment and violence, and additional social, legal and economic vulnerability.
One of the greatest barriers, and ‘the elephant in the room’, in relation to disabled women’s ability to engage in self-advocacy, is the unnecessary competition for opportunities to input, to influence decisions and for resources brought about by the State’s failure to begin robust implementation of the CRPD Committee’s General Comment 7 recommendations.
It is important that the views and expertise of disability service providers, charities and parents’ groups are heard, but this should not be at the expense of disabled people.
The unwillingness to tackle this traditional prioritising of others’ voices over our own also leads to the erasure of important aspects of disabled people’s experiences; for example, the majority of disabled women are parents and a great many disabled children have disabled parents, yet these are not who decision-makers have in mind when they speak about or consult with “parents’ self- representative groups” in relation to disability.
While this Committee has done great work in undertaking the attitudinal and accessibility shift in thinking needed to engage with Article 4(3), the same cannot be said for many other Oireachtas Committees, consultative processes or decision-making bodies.

Too often, other decision-making fora neither seek the input and expertise of disabled women nor make it accessible for disabled women to engage with them.
The majority of public consultations are still held using inaccessible methods or locations, on timeframes that limit or rule out disabled women’s ability to contribute and rarely consider the importance of gender or ethnicity in people’s experience of disability.
Public and other State consultations continue to be held on short notice with overlapping deadlines, making it impossible for DPOs, at their current level of capacity and resourcing, to input on many policy areas effecting their membership or to highlight concerns of inequality in legislation.

Across all metrics, disabled women are significantly more likely to live in poverty than both non- disabled women and disabled men.
A truth seldom acknowledged is that, for most disabled women, self-advocacy is self-funded.

Our members have put their hands in their pockets to the tune of thousands of euro to pay for transport to consultations, cover childcare costs to attend meetings, fund accessibility necessities like ISL interpretation and more, and have even missed work in the hope - but with no guarantee - that their participation will effect change.
We are proud of the selflessness and generosity our members continue to show, but we are angry on their behalf that it is asked of them.

While the gradually increasing awareness among some State bodies of their obligations to consult with DPOs & disabled advocates is welcomed, without a related commitment to DPO funding and capacity building it is largely tokenistic and unlikely to effect real change.
Many of these bodies and Departments will not engage outside office hours as their staff need to be paid for their work, but seem less than concerned at what could be seen as the exploitation of the free labour and expertise of disabled women.

It's time for the State to put its money where its mouth is and meet its financial obligations under General Comment 7.

Disabled people cannot keep paying to have a voice in our rights forever.
There is also a lack of both transparency and accountability regarding the extent to which self- advocacy work is considered in decision-making and policy development.

Once again, we strongly urge the adoption of a feedback mechanism by all levels of Government and by State bodies to demonstrate engagement with submissions made by disabled self-advocates, whether or not their recommendations were incorporated into final decisions.
It is also important to highlight that the topic and scope of most State consultations are decided without the input of disabled advocates or DPOs, meaning we can only respond to, rather than take lead on, the issues others deem important.
Although this approach is acceptable in this context, if we wish to meaningfully uphold the principles of the CRPD and empower self- advocacy in the disabled community, we also need to create accessible alternative pathways through which disabled people and their DPOs can raise issues of urgency and importance to our community.

Disabled people have, on average, more limited time, energy and resources than non-disabled people.
We also have less access to traditional means of getting our issues onto the agenda, such as marching and demonstrating, letter or email writing campaigns to public representatives and even are less likely to succeed in getting the media to engage with us on issues that are conveyed through anything besides individualised stories.
While there is great power and value in personal experiences and testimonies, we must not respond only to personal accounts or have an expectation that disabled women need to publicly perform their trauma in order to be heard.

Not only can this be psychologically devastating and emotionally exhausting, it undermines our right to collective representation and obscures the systemic nature of many of the issues we’re advocating on.
Data, statistics and research are important aspects of advocacy and we must move beyond expectations that disabled people in Ireland must disclose intimate details of our lives in order to motivate decision-makers to take action on issues of systemic inequality.
Personal stories can be treated as personal problems, making us lose sight of the social and economic forces underlying these experiences and disempowering us from being a driving force in identifying and implementing the changes that would make these stories less common.
On the flip side, disability isn’t a one size fits all experience; all voices need to be heard, both the individual and the collective, or we risk privileging only those disabled people who have access and ability to self-advocate and leaving the many others behind.
If we prioritise focussing on self- advocacy over collective advocacy, we also risk forcing disabled people to continue the exhausting and uphill battle of having to fight the same fights over and over again, as all wins are individual, leaving structural change forever out of reach.

Self-advocacy also entails very real dangers for the individual advocating.

Not everyone has the privilege to take on that risk.
Even those who have access to the information and platforms they need to advocate on their own behalf may not be able to afford the risks that come with it.

People reliant on supports and services for survival often fear reprisal or other negative consequences, or being labelled as a troublemaker, if they speak out too strongly and this fear is felt even more keenly by those in residential services with no immediate network of support around them.
For others, speaking publicly comes with the risk of having to disclose their impairment or diagnoses in ways that can cost them career opportunities or cause them to be socially stigmatised due to pervasive prejudices about disability.
For example, we work with many incredible Autistic and otherwise neurodivergent advocates who cannot disclose their identity without risking losing their job or being driven from their professional field; with more than half of employers unwilling to hire ND people for any position regardless of their experience and qualifications, these ableist attitudes pose a very real and present danger, particularly for those who work in Autism services or in supporting children.
An even greater source of fear and silencing for many disabled women are the biases and negative attitudes towards disabled parents.

In the most recent Public Attitudes Survey, more than a third of respondents believed that autistic people or people with intellectual disabilities should not be allowed to be parents.1 These attitudes make their way into public bodies, healthcare services and other decision-making spaces which have power over disabled people’s lives.
Disabled parents who speak publicly about their experiences and struggles fear being judged an unfit parent and even risk having their children removed from their care.

DWI have spoken to multiple women who have had their Parental Capacity called into question or who have lost custody of their children due to judgements of their capacity to parent made solely on the basis of their diagnosis.
We strongly urge the Committee to read the recent Re(al) Productive Justice Project report2 published by the CDLP and to speak with disabled women about their experiences of parenting and stigma.

Non-disabled people also underestimate the psychological and emotional toll self-advocacy takes on an individual.
In undertaking advocacy, we are constantly exposed to structural and systemic biases, we frequently experience tokenism and exploitation and are forced to listen to people speak about us in dehumanising, infantilising and sometimes aggressively bigoted terms.
There is huge pressure on disabled advocates to be the presentable face of disability, to greet prejudice with polite grace and patience or risk being labelled unreasonable, and there is a lack of recognition of the reality that while able-bodied people can walk out of the room and forget what was to them an academic difference of opinion on disabled people’s rights or capabilities may be a deeply traumatic experience of othering for the disabled advocate.
In order to empower self-advocates and respect the true depth of their expertise, we must fully and openly acknowledge both the power differential involved in consultation and the structural and systemic nature of ableism.
Ableism parallels and intersects with other forms of structural 1 2017 Public Attitudes Survey, National Disability Authority, p.52: https://nda.ie/uploads/publications/2017- Main-Report-National-survey-of-public-attitudes.pdf 2 Submitted as a supporting document to this submission, alongside General Comment 7 of the CRPD Committee on Articles 4(3) and 33(3).

oppression, such as racism and sexism, and exists far beyond its expression in the form of interpersonal prejudice.
Too often the systemic reality of ableist discrimination is treated as taboo, which restricts disabled advocates from naming it and speaking freely and authentically about their experiences.

Challenges to a narrative which paints all non-disabled people as well-meaning but uninformed often face strong censure and can be justification to call the credibility of disabled advocates into question.
We hope that today’s meeting offers the opportunity to discuss some of these concepts in greater depth, so that we can begin to create the systems and supports necessary to allow disabled people to engage in self-advocacy, either individually or through DPOs, and the supports needed to enable and support DPOs to perform their functions under the UN CRPD.