Independent Living Movement Ireland

Independent Living Movement Ireland (ILMI) briefing on Health (Assisted Human Reproduction) Bill 2022

Representative: Selina Bonnie MA

Thank you for the opportunity today, to speak to you on behalf of Independent Living Movement Ireland (ILMI), whose aim is to support disabled persons to achieve Independent Living, choice and control over our lives and full participation in society as equal citizens. As a national representative Disabled Person’s Organisation (DPO), ILMI promotes the philosophy of Independent Living and works to build a truly inclusive society. 

This morning I am joined by colleagues from Galway University CDLP and Disabled Women Ireland to:

  • Outline our reproductive justice concerns and resulting key asks regarding the Health (Assisted Human Reproduction) Bill 2022;
  • Stress the importance of your amendments and comments being underpinned by a foundation of equality and an understanding of intersectionality; and
  • Remind members of Ireland’s responsibilities under Article 23 of the UNCRPD which is concerned with respect for home and the family, including the right of disabled persons to found a family.

Reproductive justice is the ability to make decisions, and have choices respected, around becoming a parent or not. This includes fertility, contraception, assisted human reproduction including surrogacy, abortion, pregnancy, birth and parenting, fostering and adoption.

My statement is based on my experience as a disabled person, a mother and reproductive justice activist. I am Vice Chair of Independent Living Movement Ireland, a member of the Assisted Human Reproduction (AHR) Coalition and I was a regional ambassador for the Galway University Centre for Disability Law and Policy Re(al) Productive Justice project. I am also a ‘survivor’ (and I do not use that word lightly), of the Assisted Human Reproduction system in Ireland.

ILMI became active members of the AHR Coalition in response to the glaring absence of voices / experiences of people identifying as disabled in both the oral and written submissions for the pre-legislative scrutiny of the Health Assisted Human Reproduction) Bill in 2017. We believe that joining with like-minded reproductive justice groups and working in an intersectional way is the most effective way to achieve rights based AHR legislation and services in Ireland. 

The purpose of my participation in today’s briefing is to put the voice of a disabled person who has lived experience of infertility, and the need for inclusive access to AHR (an important component of reproductive justice) on record, and to stress the importance of your amendments to the Health (Assisted Human Reproduction) Bill 2022 being underpinned by an understanding of intersectionality.

My colleagues and I are here today in a very public setting to implore you to consider the most private of rights which go to the very core of human existence, and which have been largely denied to disabled persons thus far.

Historically disabled persons have been considered passive dependent recipients of care, eternal children, vulnerable people to be fixed or hidden away in the family home, or involuntarily incarcerated in various facilities and institutions. We were considered asexual, or our sexual desires were considered problems to be ‘managed’. Disabled women in particular have been considered most vulnerable. These varied and widespread misconceptions have had a detrimental impact on disabled persons access to reproductive justice and fulfillment. It is important to acknowledge the historical treatment of disabled persons to understand why it is essential that you listen to the voice and experiences of disabled persons, and then use what you hear, to inform your amendments to and comments on the Health (Assisted Human Reproduction) Bill 2022 during the impending committee stages of the legislation.

The narrative around disabled persons, can be very one-dimensional and an intersectional approach is required. Intersectionality is a framework for understanding how social identities – such as gender, race, ethnicity, social class, religion, sexual orientation, ability, and gender identity overlap with one another. Understanding intersectionality with regard to disability is essential for the creation of appropriate laws and policies and the design and delivery of accessible, inclusive services. What makes disability unique is that anyone regardless of age, ethnicity, sexual orientation, gender identity or socio-economic status can become a disabled person at any stage in their life. This fundamental fact should underpin your actions with regard to the legislation and in your individual responsibilities as elected members to ensure that ‘disability’ does not continue to be a separate section / action within mainstream strategies and laws (if included at all).

According to Census 2016, 13.5% of the population are disabled persons. Almost half are disabled women. Disabled people, with genetic / 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 (and my non-disabled husband through his ‘association’ with me), have experienced this discrimination. My personal journey to motherhood took 15 years and involved two miscarriages, one preterm daughter Ashika Noor who lived for one hour, one failed IVF treatment and finally in 2007 the birth of our precious daughter Saira Noor. My journey also included exclusion from intercountry adoption due to my being considered incapable of being a mother due being a disabled woman. 

My experiences are not unique, but they are very private. However, I am sharing our story (with my husband’s full support), with you because I hope that through your actions, other disabled persons (and their partners), and disabled intending parents, will not experience as much heartache, exclusion and prejudice in the future. Ableist attitudes exist across assisted human reproduction, maternity and parenting services and the research findings that my colleague outlined this morning certainly bear this fact out.

Based on my personal experience, and as an activist and academic in the area of reproductive justice for disabled people, I have significant concerns about the forthcoming Health (Assisted Human Reproduction) Bill 2022 and its’ potential negative impact on the rights of disabled persons to access assisted human reproduction services. My colleagues and I are particularly concerned that the sections addressing Safety of Children, Pre-implantation Genetic Diagnosis, and criteria regarding approval of Intending Parents will be not be informed by a rights-based understanding of the abilities of disabled persons.

The following is a list of the key areas of the Health (Assisted Human Reproduction) Bill 2022 that we believe require your particular attention and action to ensure that the legislation secures reproductive rights for disabled persons.

The entire justice and social work systems relating to disabled parents requires significant overhaul to ensure that they are underpinned by clear equality criteria. Amending this Bill to ensure that disabled persons can get on the path to parenthood through each stage / option within the Assisted Human Reproduction journey is a fundamental step. 

We have significant concerns that Section 16 ‘Safety of Children’ will be used to deny disabled people the right to have children. Disability should not automatically be considered a risk and we strongly recommend that this section should be removed or at the very least reworded. This section presumes a risk of harm that must be offset by the assessment of a person who does not have any relevant qualifications to carry out such assessment. Our concerns are voiced specifically on behalf of disabled persons and people with illness who have been denied reproductive services and adoption on the basis of ableist prejudices. For example, during my fertility journey a doctor wanted a guarantee that I would not have a disabled child before he would accept me for IVF treatment. 

The proposed Section 16 assessments seem to us to be pre-conception parental capacity assessments. Parental capacity assessments are inherently discriminatory. The assessments do not recognise the true parenting potential if appropriate supports were put in place. Disabled parents are being held to a much higher standard than non-disabled parents and this should not be permissible under the new legislation.

With regard to pre-implantation genetic assessments it is essential that conditions included on the list are not based on ableist or eugenic beliefs. The phrase “suffers from” is currently used in this section of the Bill. We consider this to be presumptive and potentially emotive ableist language and request that it be removed.

Through the research carried out by the team in Galway, and through peer consultations, we have heard descriptions of over-zealous social workers sharing information about disabled people and prejudicing the reproductive services they receive unnecessarily. This ties in with the proposed Section 37 where information can be exchanged between AHR provider and medical practitioner without the consent of the individual. We believe this to be a gross invasion of privacy. We see this as an extremely broad provision providing widespread and seemingly limitless authority to AHR providers to breach a disabled persons (or an intending parent’s), confidentiality without their consent.

There is a significant lack of accessible information across all stages of reproductive decision making for disabled persons. Under Section 12 of the Bill, it is imperative that the ‘AHR information document’ is available in multiple formats (including Easy Read and plain English) to ensure everyone can access the information equally and as barrier free as possible. Information that is specific and relevant to the lives of disabled persons is also essential. I would also take this opportunity to draw your attention to the fact that the information and communication needs of Deaf persons are often forgotten.

A position should be created in the AHR Regulation Authority (AHRRA), for an ‘Equality Standards and Ethics Monitor’. This role would be someone with specific oversight on implementation of equality and human rights. The Bill mentions gender balance with regard to the AHRRA Board but does not include any other criteria for equality. 

When deciding on the countries to be included in the ‘green list’ for international surrogacy it is essential that any choices are founded on robust equality criteria in order to avoid discrimination against persons from the 10 identified groups within our equality legislation. This issue is particularly significant for single women, same sex couples and disabled intending parents (remember intersectionality).

On behalf of Independent Living Movement Ireland, colleagues in Galway University CDLP and Disabled Women Ireland I would like to thank you for joining us today to listen to the lived experience, and resulting concerns, of disabled persons with regard to reproductive justice in Ireland in general, and the Health (Assisted Human Reproduction) Bill 2022 in particular. 

Every individual has the power to effect change. You as public representatives have a greater power and therefore a greater responsibility to use your power, individually and collectively, to effect change. Throughout your deliberations regarding the Health (Assisted Human Reproduction) Bill 2022, remember intersectionality, remember equity of access, and remember that disabled people are more than just disabled people, we are everywhere, anyone can become a disabled person at any stage in life and we have a right to have our needs considered and met with dignity, and in ways that are sensitive to the diversity of our experiences, backgrounds, and family composition.

Thank you.

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