ILMI eBulletin 12th May 2023

ILMI Logo Independent Living Movement Ireland. Freedom Rights Empowerment

Conversations About Activism and Change

IMAGE: photo shows book contributors in a row with smiles on their faces. Colm Whooley, Des Kenny, Dermot Hayes, Jacqui Browne, Ann Marie Flanagan, Eileen Daly, Selina Bonnie, Michael McCabe and Sarah Fitzgerald.

Published by Martello Publishing, Our Book is now available to buy or order in all good bookshops, including Amazon for your kindle check out this link

Conversations About Activism and Change was edited by Sarah Fitzgerald, and features a foreword by Niall Crowley with contributions from Des Kenny, Eileen Daly, Selina Bonnie, Jacqui Browne, Maureen McGovern, Peter Kearns, Ann Marie Flanagan, Dermot Hayes, Colm Whooley, Michael McCabe and Sarah Fitzgerald

ILMI participate in National Climate Stakeholder Forum (NCSF)
IMAGE: photo of the conference room with lots of people sitting in rapt attention focused on the speaker and a screen.

Climate change is the decisive challenge facing humanity and urgent action is required to stabilise the planet for this and future generations. Failure to act nationally and globally will have disastrous effects on billions of people’s lives. But climate change does not discriminate, it does not pick and choose whom to affect for our mishandling of our home. Discrimination; that is the job of our species. As a national Disabled Persons Organisation, we are concerned that failure to treat climate change as a global emergency will have even greater consequences for people who are pushed to the edges of society, and precisely the lives of disabled people nationally and internationally.

On Wednesday May 10th, ILMI were delighted to participate in the National Climate Stakeholder Forum (NCSF). The NCSF is as a central pillar of the National Dialogue on Climate Action (NDCA). It was a full day of presentations and active workshops on a range of topics, including sustainable mobility policies, which was launched in April , and has very clear commitments to the hierarchy of road users model, inclusive access for all, whole of journey approach to mobility and universal design principles. ILMI will continue to work with the Department of Climate change as a national DPO to embed principles of equality and inclusion into climate change adaptation and mitigation measures.

Damien Walshe and Peter Kearns represented ILMI recently at the Oireachtas Committee on Disability Matters which discussed the Climate Crisis and Disability. The debate can be read here or the video of the debate can be accessed here (the debate begins at 17 minutes in)

ILMI joins the Coalition 2030
IMAGE shows Coalition 2030 logo

ILMI are delighted to have been accepted into the Coalition 2030 this month. Coalition 2030  is an alliance of 70 civil society organisations from the international development, environmental, anti-poverty and trade union sectors working together to ensure Ireland keeps its promise to achieve the Sustainable Development Goals (SDGs) both in Ireland, and abroad.

ILMI have begun to explore how disabled activists can utilise the Sustainable Development Goals (SDGs) as part of their work locally and nationally, and will develop spaces and resources to ensure that disabled people are actively involved in strategies for a more sustainable, inclusive Ireland.

Coalition launched report can be found here

Fiona Weldon Disability Equality Training (DET) in NWCI
IMAGE: photo shows a group of 11 people standing and sitting including Fiona and all smiling with a TV screen behind showing the ILMI logo.

We were delighted that our member group ILMI were able to facilitate us on the 10th May for a workshop on Disability Equality. We had the opportunity to learn more about the lived experiences of disabled women in Ireland, challenge our own unconscious biases and think about ways to ensure our feminism is inclusive for disabled women. Building an inclusive and diverse feminism is an important goal of our current strategic plan “No Woman Left Behind” and is critical to our work.

The disabled women’s group who worked with NWC over two years made a strong recommendation that inclusion for disabled women was mainstreamed across the organisation. The team felt it was really important to continue to develop our own awareness and continue to focus on how we can remove the barriers to participation and support the voices and experience of disabled women across our work on health, violence against women, leadership, climate action and in our communications.

We look forward to continuing to work with Disabled Persons Organisations and disabled women in the collective struggle for rights and equality for all women.
Written by Catherine Lane NWCI

Disabled People and the Assisted Human Reproduction (AHR) Bill
IMAGE photo shows the delegations outside Leinster House.

On Wednesday 3rd May, ILMI, Disabled Women Ireland (DWI) and the Centre for Disability Law and Policy (CDLP) of University of Galway made presentations to members of the Oireachtas on the concerns of disabled people and proposed legislation in relation to Assisted Human Reproduction (AHR).

Eilinoir Flynn (University of Galway) outlined the findings of the Re(al) productive rights research programme and issues that disabled parents and intending disabled parents encountered from accessing AHR, and also some of the supports they received. Louise Milicevic (DWI) spoke about the ableism she and her husband experienced as disabled parents from a system that consistently questioned their parenting through an ableist lens and how they overcame that and how attitudes and systems need to change.

Selina Bonnie (ILMI Vice Chair) brought her lived experience as an academic on reproductive rights, as a disabled activist and as a survivor (a term Selina does not use lightly) of the Assisted Human Reproduction system in Ireland. Selina specifically raised issues with the current proposed legislation, specifically the following points:

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.

The inherent ableism in the 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.

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.

The presentations were well received by a well-attended discussion and commitments were made by a number of TDs and Senators to table amendments based on the inputs made on the day.

The presentations will be made available to all TDs and Senators to inform their scrutiny of legislation and a press release based on the presentations will be issues once the legislation is published for debate in the Oireachtas before the summer.
Selina’s input to the members of the Oireachtas can be found here

The University of Galway reproductive justice project toolkits, which are designed to support disabled people and health and social care practitioners. They are designed to encourage good practice in respecting the rights of disabled people to make reproductive decisions, and providing appropriate support so that they can make informed choice.
They can be accessed here

Development of a national fertility hubs and the inclusion of disabled people
In the Budget 2023, there was a commitment to investing in a publicly funded IVF system. ILMI contacted the Department of Health to explore how the development of regional fertility hubs would be rolled out and how they would ensure they were inclusive of intending disabled parents and accessible to disabled people’s needs.

Selina Bonnie, ILMI Vice chair and Damien Walshe had a meeting in April with HSE staff representing the National Women and Infant Health Programme (NWHIP), who have responsibility for the development of a model for fertility care in Ireland.

Selina raised ILMI concerns that the development of a model of fertility care in Ireland needed to be address implicit and explicit ableism both with healthcare professionals and healthcare systems, specifically attitudinal barriers for disabled people seeking fertility treatment. Selina also raised issues of access to the fertility hubs, in terms of equipment such as hoists, adjustable tables and so on are vital, but also attitudes of staff towards disabled people is vital. Selina stressed the voice of lived experience and building links with disabled people to proof these hubs will allow staff to plan to build in access as opposed to disabled people feeling that they are the “problem” when inclusion is not invested in. It was a very productive meeting, and NWIHP staff welcomed that ILMI could be a crucial ally in their development of fertility supports that are inclusive of all intending parents.

With the likely available fertility treatment is not based on current public health capacity so in the interim, fertility will be based on a hybrid of public / private hospitals. Figures from 2020 indicate demand was for 9,000 cycles of fertility treatment but NIWHP expects that demand to rise with the new system. Tests are linked with other clinical factors (age, smoking, body mass index and so on) for eligibility for fertility treatment. The clinical criteria for recommendation of fertility treatment will be agreed by September for private providers of what will be covered by the new public funded system.
A tender process is being drafted for private providers to deliver the new system. The tender system has been equality proofed in terms of access, but Julie agreed to review again and link with ILMI for queries.

Selina raised that the eligibility criteria needed to be aware of implicit and explicit ableism both with healthcare professionals and healthcare systems, specifically attitudinal barriers for disabled people seeking fertility treatment.

NWIHP are engaging with colleagues in the US and UK (specifically the Hewitt Fertility Centre in Liverpool) to ensure that pre-screening measures will not lapse into eugenics but that this will be directed by the AHR Bill.

Selina raised issues of access to the fertility hubs. NWHIP acknowledged that as they were based in existing maternity hospitals, most of them are built in the 19th Century (apart from Cork University hospital) and access is going to be an issue that has to be addressed. Selina raised that equipment such as hoists, adjustable tables and so on are vital, but also attitudes of staff towards disabled people is vital. Selina stressed the voice of lived experience and building links with disabled people to proof these hubs will allow staff to plan to build in access as opposed to disabled people feeling that they are the “problem” when inclusion is not invested in.

Housing and Disability

ILMI recently attend a meeting of the new National Working Impletion Group that was established to oversee the outcomes of the National Housing Strategy for Disabled People 2022 – 2027. ILMI is a member of the Implementation Group and will be over the next few years holding consultations with the wider disability collective on issues related to the strategy.

At a local level, the Housing and Disability Steering groups (HDSGs) will be working on the basis of a local authority’s progress and ILMI are keen that disabled people’s perspectives are represented on these HDSGs. This is where change happens – from grassroots, enlightened and supported activism.

Keep an eye on our social media and newsletter over the next few months (and years) where we will be giving updates on the National Housing Strategy for Disabled People and also seeking interested local disabled people for membership of their local HDSGs.

More information on the strategy

BusConnects Consultations coming up

BusConnects Cork Sustainable Transport Corridors – Preferred Route Option Public Consultation Round 2 info here

BusConnects Galway
Public Consultation – we’ve redesigned the bus network and we want your views on it. Public information events will take place from Tuesday 16th – Thursday 18th May (inclusive), see details of these events. Two online webinars will also be held on the 23rd & 25th May to register for these  click here for the details

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