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 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 population. Almost half 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 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 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.