Joint Committee on Assisted Dying debate -
Tuesday, 16 Jan 2024

Engagement with People with Disabilities

An Cathaoirleach

Apologies have been received from Deputy Alan Farrell.

Parliamentary privilege is considered to apply to the utterances of members participating online in a committee meeting when their participation is from within the parliamentary precincts. There can be no assurances in respect of participation online from outside the parliamentary precincts. Members should be mindful of this when contributing.

This committee discusses dying, including suicide. Support information can be found on the committee's web page.

Before moving to the agenda for today, on my own behalf and that of the secretariat, I wish all of the members every good health and happiness in the coming year of 2024, which will be a challenging year. It will probably be an election year of some sort. We wish everybody good luck. I also warmly welcome our witnesses today.

Our agenda item today is on the topic of engagement with people with disabilities. It is part of the module examining the potential consequences of assisted dying. We welcome Mr. Peter Kearns, development officer of Independent Living Movement of Ireland, ILMI; and Mr. John Dolan, CEO of the Disability Federation of Ireland, DFI. We are grateful for them giving their time and sharing their knowledge and expertise with the committee.

The format for this meeting is that members will ask questions after all of the witnesses have given their opening statements. A member can ask a question of an individual or address a question to witnesses more generally. I ask that all witnesses keep their opening statements to the agreed five minutes. I invite Mr. Kearns to give his opening statement.

Mr. Peter Kearns

We thank the Joint Committee on Assisted Dying for the opportunity to bring the voice of disabled people through our authentic collective disabled persons organisations to discussions about legislating for assisted dying.

As a disabled persons organisation, DPO, we have created safe spaces for disabled people to talk about the proposed dying with dignity Bill to capture the diversity of views disabled people have on proposed legislation. The core message was that disabled people do not want to be used as pawns for either side of the debate. No politician can or should claim to speak for disabled people. Too often in discussions like this, disabled people’s lives are used as a political football. It is vital our voices are heard in any discussion about assisted dying legislation. Choice is central to the philosophy of independent living. It should be about disabled people having control over all aspects of our lives and appropriate supports and resources in order to achieve our life goals. Choice should not just happen at moments of crisis or imminent death. It is the lack of choice, control and agency throughout our life course that is the underlying reason society is so inaccessible to disabled people and excludes and isolates us systematically.

In November 2019, ILMI worked with Deputy Thomas Pringle to introduce a Private Members' Bill to discuss the right to a personal assistance service, PAS. It is telling that due to Dáil Standing Order 179 Deputy Pringle was unable to bring a Private Members' Bill for debate in the Oireachtas. A motion passed on the 19 November 2019 in lieu of a Private Members' Bill being introduced called “to ensure that any new legislation or Government policy on independent living conveys the right to access a personal assistance service in this country so that disabled people have choice, control and freedom to participate in society as equals”.

ILMI feels that the choice of the Oireachtas to resource a committee to prioritise speaking about assisting people to die as opposed to an Oireachtas committee developing systems that would allow disabled people to live in dignity is a worrying development.

Many disabled people are hugely concerned that discussions about assisted dying will inevitably lead to discussions about assisted suicide. In other jurisdictions where assisted suicide has been legislated for, disabled people frequently speak about feeling hopeless, having nothing to live for or feeling they would be better off dead, and take the State’s only clear support option to cross the Rubicon to clinically assisted suicide. Disabled people feel that the primary discussion needed right now is a discussion about the fundamental right to have an effective choice to live a life of dignity. This means supporting and resourcing life for everyone and ensuring people with impairments get the life-course supports they need so they can live full lives of their choosing and not have their life options limited by society.

We are at an important point as a society. Disabled people are lobbying politicians to bring about a right to a personal assistance service and it would sadden disabled people if the right to die was granted over the right to live a life course of dignity. Disabled people who have the supports they need to live full, independent lives with choice and control are freed from lives lacking agency or hope or burden. They can and do live lives full of value. Many disabled people in other right-to-die discussions use narratives of not wanting to be a burden and often talk about the impact of the lack of supports on living the lives of their choosing. Disabled people feel the priority right now needs to be ensuring the supports needed for the right to live independent lives are legislated for first, over a priority option of assisted suicide, as part of a constructed health policy informed by perceived narratives of life course-limiting impairment labels or conditions.

Before there is any discussion around possible health policy and legislation options enabling assisted suicide, there first needs to be discourse with disabled people, through our mandated DPOs, regarding the UN Convention of the Rights of People with Disabilities, UNCRPD, obligations ratified by the Irish State in 2018 on the quality of our life supports. A future health policy option of facilitating the systematic roll-out of assisted suicide should not be about people feeling that they must end their lives because of a lack of supports and services. Real UNCRPD choice throughout a disabled person's life course is very much not about a systematic health policy option of assisted suicide, which can clearly imply that someone who has an impairment, including an acquired impairment, is not able to experience a full life at every life stage. Many ILMI members feel that this will include the fear that a State-facilitated systemic option of assisted suicide throughout one’s life stages could lead to disabled people making choices whereby, through a lack of supports, they begin to view themselves as a burden on families, the State and Irish society.

Many disabled people are opposed to assisted suicide or dying legislation as it could become a slippery slope, moving from the subjective undefined phrase of "dying with dignity" to assisted suicide.

The medical-charity model individualises disability and promotes the idea that people are disabled by their impairments or differences. The medical model always focuses on

people’s impairments from a medical perspective. In some ways it still looks at what is "wrong" with the person and not what the person needs. It creates low expectations and leads to people losing independence, choice and control in their own lives. The medical-charity model never recognises the rights of disabled people and assumes that disabled people need to be looked after or cared for. The medical-charity model has professionals making choices and decisions for disabled people.

ILMI has concerns that assisted dying legislation in other jurisdictions reinforces the medical view of disability, including naming of specific so-called "life limiting" impairments within legislation is of huge concern to disabled people. Many disabled people feel that an attempt to provide a definitive medical definition of "terminal illness" is problematic as it can never be precise. Identifying impairments in the legislation could lead to people with certain impairments viewing their lives as worth living or not. What Ireland needs is a conversation about the needs of disabled people and the proper practical, emotional and medical support needed to live dignified lives.

In other jurisdictions during Covid-19, the lives of disabled people were not valued or treated equally. Disabled people were told that their lives were not worth saving. While disabled people in Ireland did not face such discrimination, we need to be mindful of any discourse in relation to assisted dying that can trigger commentary with eugenic overtones about who is "worthy" of supports to live.

Any discussion about dying with dignity needs to look at the resourcing for a high-quality palliative care system, which is respectful and supportive of people at the end of their lives and which recognises the role of families. The role that hospices play is vital in Irish society, yet they have to fundraise continuously. End of life care needs to be recognised as a vital part of our healthcare system and resourced accordingly. Many countries have advanced healthcare directives, which need to be addressed in any full discussion about death and dignity.

Some disabled people feel strongly that assisted dying is a natural expression of choice and equality and being in control of the fundamental aspects of their lives. Many people have seen people at the end of terminal diseases wracked with pain, and felt that this was something that they do not wish to see again. It also could be seen as the final human right for people who wish to leave the world at their choosing, free from pain.

This is where the subjective narrative of undefinable dying with dignity morphs into societal discourse where the conversation changes from people who are terminally ill, to people choosing to end their lives due to perceived labelling, which in other jurisdictions has often focused on people with impairment labels who, without the supports to live a free and full life, feel that their lives are not worth living. There are fears which are real and justified based on very recent history. We live in a society that is obsessed by productivity. Even our national development plans have used the phrase productive units rather than people as citizens.

In other jurisdictions, health policy systematically supplied assisted suicide often gives medical authority to judge quality of life or the subjective phrase of life-limiting condition. Societal discourses about assisted dying in other jurisdictions are often enshrined in a medical-model problem discussion of the term disability. Such mainly non-disabled discourses show clear evidence of being impairment label led, perceived general societal ideas and feelings of fear of becoming disabled as opposed to a more rights-based social model of disability championed by the UN convention and Irish and international disabled activists. It is only 80 years ago that across Europe people who were viewed as unfit or a burden in society were murdered in their hundreds of thousands.

Many disabled people have huge concerns about assisted dying, especially about who would decide a person has a life-limiting condition or is on the spectrum of dying of a terminal illness. Disabled activists and academics involved with ILMI and other national and local disabled persons organisations are concerned how the system will cope with subjective dying decisions, including how the capacity of people, especially those with newly acquired impairment labels and terminal diagnoses, is facilitated by health and care policies, family and the strong pro-dying-with-dignity discourse throughout Irish society when making problem-led choices about their lives. If the discussion moves from people who are terminally ill towards discussions about quality of life, then who decides what is quality of life? In other jurisdictions, conversations about assisted suicide have led to societal discussions about quality of life and have enabled comments such as, "If I was you, I would kill myself" to be made publicly, all of which have impacted on disabled people’s lives.

The social model of disability and the practical aspirations of the UNCRPD need to inform any discussions about how disabled people are included in Irish society. The social model looks at how society is structured and how it disables people. It is not based on a person’s impairment or on that person or the society perceiving the life course as a problem to fix. It is about what barriers that exist in terms of attitudes, policy development, access or lack of supports that prevent people from participating in society as equals, with choice and control over their own lives. In this model it is society that disables people and prevents them from achieving their hopes and dreams, not a person’s impairment.

When disabling barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives. Barriers are not just physical. Attitudes found in society, based on prejudice or stereotypes, also called disablism, also disable people from having equal opportunities to be part of society.

Disabled people developed the social model of disability because the traditional medical model of the personal tragedy of perceived impairment life stages did not explain their personal experience of disability or help to develop more inclusive ways of celebrating living throughout one’s life course.

The social model of disability informs key international conventions, such as the UNCRPD, and is in contrast to the medical or charity model of disability.

An Cathaoirleach

Thank you, Mr. Kearns. I now invite Mr. Dolan to make his opening statement.

Mr. John Dolan

Go raibh maith agat, and thank you, Mr. Kearns.

I wish to thank the Cathaoirleach and members for this opportunity to contribute to the committee's work. In preparing for this hearing, I have paid particular attention to the order of reference at item 2 (a), (b), (c) and (d), namely, how such provision might operate, safeguards, constitutional, legal and ethical issues and unintended consequences.

The Disability Federation of Ireland, DFI, is a federation of over 120 member organisations working with people with disabilities to implement the United Nations Convention on the Rights of Persons with Disability, UNCRPD. Our mission is to ensure the equal participation of disabled people in society.

As the chief executive of DFI, I am comfortable about bringing my insights and thoughts to the committee's attention to assist in developing its report and recommendations. I aim to reflect the thrust of the foundational values of DFI, which are to support disabled people to have full and meaningful lives. Member organisations of the federation may have different or similar views or perspectives, as this matter, like no other, surfaces thoughts, emotions and questions which can be as unsettling as they are varied and challenging, while the objective here is a benign one.

Assisted dying is the focus of these hearings yet dying only has meaning as that which always brings a person's life to a conclusion.

Therefore, this presentation will focus on living and the quality of that living. The work of the committee comes as Ireland is taking unprecedented steps in order to implement the UN convention including, but not limited to, the following articles of that convention: Article 19, which is on living independently and being included in the community; Article 10, which provides for the right to life; Article 17, which relates to the integrity of the person; and Article 25, which addresses health. Three of those articles use the word "enjoyment" while the other one talks about respect.

This fact helps me to make the point that the committee's remit must be framed around, and subject to, being of assistance to people where, as a State, we have supported them to have had a full life. Many disabled people in Ireland are caught up in a daily cycle of worry about how to survive on an income that the State has recognised for decades as wholly inadequate because it does not factor in the varied and necessary additional costs of living with a disability. At the same time, people are consumed by worry about their lack of or marginal home support hours, which are needed before they can ever dream of having the supports that would make them independent members of the community.

In Ireland, disabled people have reported poorer health status than the rest of the population. They are often subject to intersecting layers of social and economic disadvantage and other barriers that drive health inequality. As a result, they frequently experience worse health than people who do not have disabilities. This is beyond the direct effects of their disability, health condition or impairment. Evidence shows that social, physical and attitudinal factors hinder health outcomes in terms of access to services and quality healthcare.

At the same time, it is fair to say that Ireland has a strong record in ensuring that people will survive life-threatening events, thus avoiding death at that point, although its actions are not sufficient to ensure they can have a full life afterwards. Within the past year, the Department of Children, Equality, Disability, Integration and Youth, published the Action Plan for Disability Services 2024-2026, which outlines the necessary increases in community-based disability services to address unmet need and meet demographic change over the coming years. In addition, the Department of Social Protection published the Green Paper on disability reform to provide for the currently unmet costs of trying to live with a disability.

My point is that Ireland is not giving sufficient assistance to disabled people to live their lives. I am asking the committee to consider how people with disabilities might think and feel about what may be proposed here in the light of their daily experiences, day in and day out, and to factor that into its report and recommendations. This is about relating the trajectory and experience of somebody’s actual living within the context of any proposals that the committee makes. It is also vitally important that the State does not unduly or unintentionally have an invisible hand or influence in the decision of someone to end his or her life because it has not supported disabled people to have a life of independence equal to others. I will finish with the words of Victor Hugo: "It is nothing to die. It is frightful not to live."

Senator Rónán Mullen

Cuirim fáilte roimh ár n-aíonna. I thank Mr. Kearns and Mr. Dolan for being with us here today and for their very thought-provoking presentations. It would be remiss of me not to welcome Mr. Dolan as a former Seanad colleague as well. I am sure both witnesses know the inside of these Houses very well but, having served with Mr. Dolan, I know he certainly knows it very well indeed.

I also thank him for focusing us on the positive in a very determined way and without denying for a minute that different people can have different views. The positive, however, concerns the major challenges that face persons with disabilities and the major distance society has to go in order to address their needs and to support people in the way they are entitled to be. I am not exaggerating too much if I draw a parallel between the witnesses and the palliative care experts who came before the committee. The latter sought to take the focus off the question of whether assisted dying should be allowed but rather asked whether we can talk about a positive campaign about helping people to live well. Indeed, palliative care is about helping people to live well until they die. Today's presentations have in common the quotation from Victor Hugo Mr. Dolan finished with about helping people to live and, dare I say it, to live well.

It seems to me that persons with disabilities and their organisations have been very prominent in this debate internationally. Dr. Rosaleen McDonagh was before the committee in recent weeks, but I am also thinking of the British Parliament, where some very impressive voices expressed concern from the perspective of their role within organisations representing people with disabilities, as did the Glasgow Disability Alliance. Something more is going on here. I will put this to our guests: it does not seem to be just about not having disability as a grounds. Mr. Dolan brought it out very clearly when he mentioned that in jurisdictions where this has been legislated for, disabled people frequently speak about feeling hopeless and having nothing to live for. Is this about the sense that an increasingly uncaring state would or could take advantage of the fact that there might be a category of people whose lives can be taken legally? We may very well be presented with the "What ifs", for example, "What if we combine it with a prognosis of terminal illness?". However, as we heard from one psychiatrist, it is very difficult to separate out categories of people because people get caught in the net. Those with mental illness who happen to have a terminal illness are then in a particular zone where, depending on the attitude of society, they might or might not have the will to continue. Will the witnesses speak to the question of whether they think this goes beyond the bare question of whether assisted dying or assisted suicide should be allowed for persons with disabilities?

Mr. Peter Kearns

I am struck by people saying to me, "If I were you, I would kill myself". They are not doing it in a bad way. The narrative and discourse, which has only surfaced in the past three years because of the original Bill, is around the idea of the fear of becoming a disabled person and the State then wanting to provide - as Mr. Dolan said, it could be in a benign rather than a sinister way - the choice of assisted suicide. The idea is that your worth as a citizen is based on an impairment label or medical label. That narrative means disabled citizens are not as valued as non-disabled citizens.

At present, disabled people in Ireland do not have to wake up thinking about this. However, and this is also true of non-disabled people, at every life stage, whether someone is aged 20, 30, 40, 50 or 60, the question will have to be asked, "Is my life worth living?" because the State has provided people with the choice of assisted suicide. We do not have to treat it like that at present. We say that the State should provide to the disabled, and Mr. Dolan also made this point, the possibility of living a life at every life stage.

Senator Rónán Mullen

The sop is often thrown out that this is only wanted for people with terminal illness, although that does not seem to address the many other situations where people suffer. If an attempt were made to legislate for it under the pretext that the person has to have a prognosis that his or her life will not exceed six months, would some persons with disabilities be particularly vulnerable in that situation because of the attitudes of the State?

Mr. Peter Kearns

Certain people acquire impairments like Parkinson’s or MS who are medically identified with an impairment label and the knowledge that can go with that. They feel their life is over. We want disabled persons organisations to have access to those people to give them the confidence and the choice to live a life. Assisted suicide should not be the first option. We can reach other disabled people to show that just because they have an impairment label, it does not mean their life is over.

Senator Rónán Mullen

Are we making progress in addressing the substantial and ongoing underprovision of the basic needs of disabled people? Could that be put on a scale of one to ten, if that is not too crass of me to ask? I am conscious time is limited.

Mr. Peter Kearns

On Friday I had to pick up my daughter in posh Sandymount. I am from Coolock. I sat there and had a cup of coffee. I had working-class parents. Because I had a label of cerebral palsy or spastic, I had to go to a special school. I had to go to Enable Ireland in Sandymount but I escaped to Ballymun comprehensive. My daughter is in Sandymount. She is a speech and language therapist. She is not that good – I am joking. A disabled child now has the choice to go to a normal local school. That has changed and the State has supported that. Many young people have access to the same options as their peers, which I did not have. That shows there is improvement.

If we go back to the narrative that if you have an impairment label your life is not as valued as somebody else’s, the danger is many young people might think about assisted suicide.

Mr. John Dolan

Rónán had two questions there. One was about an uncaring State taking advantage. I do not think Ireland is an uncaring State but we have often and repeatedly done silly things with unintended consequences. That is where I will happily keep the discussion.

Peter said he escaped to Ballymun comprehensive; he could only escape to it if it existed, and it was set up along with only two similar ones at the time, Mayfield in Cork and Ballinteer in Dublin. A huge lot has happened in the past 20 years in education of people with disabilities in local schools. There are issues around it but education is an area where we have made a determined effort to give a good start in life to people with disabilities.

As to the one to ten scale, we are only now getting on with the Green Paper, action plan and whatever and have set out huge deficits that have been there. There is a mountain to climb. There is intent but the Houses of the Oireachtas, in whatever iteration they come back in in the next year or so, have a huge amount of work to do. It is nicely below five.

Deputy Gino Kenny

I thank Mr. Kearns and Mr. Dolan for their opening statements. Would they accept that there are a variety of opinions on this issue in the disability community? We have had witnesses at the committee who hold a variety of views on this. Would Mr. Dolan and Mr. Kearns accept that?

Mr. John Dolan

I would not at this stage because I do not believe we have had enough and the sample is too small.

Deputy Gino Kenny

Right.

Mr. John Dolan

The sample we have had may not be comprehensive. I was not looking at Mr. Kearns's notes when he was putting together his presentation and he was not looking at mine. However, there is a very strong similarity in the context of a push towards the kinds of things people need, not to have an easy life but to have a life that is worthy. Rosaleen, or Dr. McDonagh I should call her - I have known her too long to call her doctor anything - has made the same point about giving people the supports they need to live their lives. The issue is going that way. We can hear that. I have not come here today and said that I am speaking on behalf of anyone. This is where it lies currently.

Mr. Peter Kearns

The disability community is not homogenous. The Independent Living Movement Ireland is a disabled persons' organisation. We have colleagues across the world. Those organisations are working on the social model. They are all concerned about assisted suicide.

Deputy Gino Kenny

I have worked in the disability area and have spent a lot of time advocating for assisted living. Assisted living is extremely important, but I also am of the opinion that in specific circumstances a person should have a say and should be able to die on his or her own terms. As I have said many times before, in the vast majority of jurisdictions where assisted dying has been legislated for, people cannot avail of assisted dying on the grounds of disability. I agree with that. In the specific circumstances where a person has come to the end of his or her life, are the witnesses saying that the or she should not have a choice or right - whatever you want to call it - in those circumstances?

Mr. John Dolan

Now is the time to focus on this country getting a decent bedrock of life-enhancing services for people. That is the priority. That is what I am saying.

Deputy Gino Kenny

What if we had all of that? I accept that there are huge deficits in the context of disability services. I understand this and most other people understand it as well, but conflating the issue with assisted dying is unhelpful. There is an element of scaremongering around conflating issues with assisted dying. It is unhelpful in the context of the larger debate.

Mr. John Dolan

As already stated, I cannot see how you can talk about dying in any way without it. The word does not make sense unless there is life beforehand.

Deputy Gino Kenny

Of course. Life comes before death.

Mr. John Dolan

Yes. They are not separate.

Deputy Gino Kenny

No. They are complementary.

Mr. John Dolan

They can be. That is the issue. They are not always complementary. I hear other people with disabilities saying "Give us a chance to have a bit of a life before the other bit comes upon us or before we are invited". That is the trick to it or the conundrum we face.

Deputy Gino Kenny

I have said before there are huge deficits with regard to disability services and the Government should do more, as successive previous governments should have.

Mr. John Dolan

That would be the flashpoint here. That would be an issue across the-----

Deputy Gino Kenny

Even if those deficits with regard to disability services were done overnight, would that change people's opinions, particularly in the disability community?

Mr. John Dolan

It would change the environment in which the discussion is taking place.

Mr. Peter Kearns

It would give choice to disabled people. It would change the life stages and life course. There is a danger that disabled people are treated as an homogenous group. There is a danger that they are even seen as childlike all through their lives. At various stages disabled people experience different barriers through their lives. Like what Deputy Kenny said, it is about proper access to proper supports. Then you have a choice.

Deputy Gino Kenny

I get that. I absolutely get it. However, if this committee were to put recommendations that, on the grounds of disability, somebody could not avail of assisted dying, would that change Mr. Kearns's opinion on this?

Mr. Peter Kearns

What do you mean by the word "disability"?

Deputy Gino Kenny

On the grounds of disability.

Mr. Peter Kearns

What do you mean by that word?

Deputy Gino Kenny

Let us put it this way. Somebody who could avail of assisted dying would be in the last throes of their life, meaning months, weeks or days in certain circumstances. That would be somebody who is terminally ill and who has a diagnosis that is life-limiting. To me, that is the crux of assisted dying.

In New Zealand, for example, they have specifically said in the provisions for their legislation that somebody could never avail of assisted dying on the grounds of disability. I completely agree with it. If we put that in our recommendation, would that change your-----

Mr. Peter Kearns

Again, we are talking about the language, whether assisted dying or assisted suicide. On language in terms of the word "disability", are we talking about impairment labels? When we talk about disability, we are talking about disabling barriers. They are two different things. If you want to put it in legislation that people's impairment labels are not included in this discourse, that is different.

Deputy Gino Kenny

Okay. I will come back in the next round.

Deputy Patrick Costello

I welcome our witnesses and thank them. I want to talk to them about the issue of barriers in society and the ableist structure of society. I had it in my head to say the barriers and challenges of our ableist society. but barriers alone is perhaps a more appropriate way of saying it. A lot of these are very external to the individual. The coercive and destructive nature of that ableist society has been well ventilated, and there are concerns about it in this committee. It is not just in this committee. In many other committees, members have spoken about how Ireland is not a friendly or supportive place. The witnesses have talked about it very clearly here today as well.

However, where my head is at and what I am thinking now, and I am in a similar position and exploring similar things to Deputy Kenny, is that I agree with the comments about living well but I do not necessarily see living well and dying well as mutually exclusive. I do not see how investing in one will automatically mean we are not investing in the other. I do not see them as mutually exclusive and I would welcome the witnesses' views on that. On the comparison to palliative care, we need massive investment in our palliative care system and it is not where it should be, but that does not necessarily mean that we should not still progress with medically assisted dying in appropriate circumstances. For me, part of it is about exploring what those appropriate circumstances are.

Mr. Kearns spoke about the concerns around subjective, undefined phrases of dying with dignity, and I agree with that. However, echoing what Deputy Kenny said, part of the challenge for us is to try to find a way to draft this legislation that is not subjective, undefined and does not provide that grey area that people with disabilities might fall into with regard to coercion or the invisible hand of the State coercing them into that. Similar to what Deputy Kenny said, what if we are able to provide objective, clear lines that state this relates to a terminal illness and it is a set time period – those kinds of protections? It will be small and perhaps exclude many people who want this option. Would that not protect against the concerns the witnesses are talking about regarding misuse or coercion?

Going back to my first point, living well and dying well are not mutually exclusive. We need to invest in living well, but the focus on that should not prevent us from also ensuring people can die well. I welcome the witnesses’ thoughts on that mutual exclusivity and the interaction between those elements. On that subjective, undefined piece, if we were able to draw it tightly enough, would that alleviate the witnesses’ concerns?

Mr. John Dolan

The Deputy talked about drafting this legislation. This committee is about both legislation and possible policy; it is not simply legislation. In fact, keeping it simply within legislation would be a concern. I can rhyme off legislation that has been passed by this House over the past 20 years that was designed to improve the lives of disabled people. For example, the advocacy Act of 2007 had a section in it – I believe it was section 7 – that talked about having a director of advocacy but we still do not have that director. We have an advocacy service that is toothless. One of the three things the committee heard from Rosaleen McDonagh was on independent advocacy. To keep it simply within a legislative box would be problematic.

On the point that living well and dying well are not mutually exclusive, if you live well, you have a better chance of dying well because you have a sense that you have left something worthy and passed on something worthy. It is not just about how any of us here might have thought about this, but rather about people who routinely and persistently have experiences that are long on promises and short on delivery.

I will paraphrase a line from the 1997 programme for Government: disability is the business of every Department. It is still not the business of every Department, even though we have a UN convention that we ratified almost six years ago. It is how people will feel - not how we will logically think they should feel - that will drive this. If you are out working every day and worried about your next appointment and this, that and the other, that is a different day from the one where you are sitting, watching the clock and waiting to hear back from a doctor, physio or whomever in respect of your income supports but not hearing back or getting what you reasonably need.

I am trying to paint a picture of people living in quiet desperation. I did not want to use the word "desperation" but I could not think of another word. That is where I think this comes unstuck. I have not said a word to indicate that I am against the State putting in place provisions to support people's deaths in the way that is being suggested. I have not gone into that area. I am not suggesting anyone else did. I am trying to push it back as best I can so we consider the life experience of people and, by umbilical proxy, those who are involved in the day-to-day love and care of people who need support and advocacy. It is not all about caring support but is also about advocacy and the people involved in that regard. I hope that helps.

An Cathaoirleach

I must move on to Senator Hoey.

Senator Annie Hoey

I hope everyone can hear me okay.

An Cathaoirleach

We can hear the Senator very well.

Senator Annie Hoey

I thank the Cathaoirleach. I apologise for joining the meeting from my office, which I hope is all right. I thank our guests for their presentations, which somewhat brought into stark focus how far we, as a State, have to go on disability rights and supports. We are a million miles from where we need to be. This committee must think about the living part as well as the dying part.

Our guests might be able to help me with the following. Many of the disability organisations and people with disabilities to whom I have spoken have talked about how society has put perceptions on them. Those are limiting perceptions as to what people with disabilities can and cannot do. Is there a possibility within this conversation or elsewhere to acknowledge that there are disabled people who, for whatever reason and not necessarily related to their disability, would wish to consider this option or would wish to be able to engage on the option and discuss the topic but because of other's perceptions of what is best for them and the disabling barriers that result from societal perception of disabled people, such people would be denied an opportunity to participate in the discussion at this stage in respect of the policy formation piece? Should the option of assisted dying come into legislation at some point, might there be some disabled people who are excluded not as a result of their having a disability but as a result of society's perception of what would be best for them? If that is the case, such people may never be able to access this end-of-life option even if they want to. I hope what I am asking is clear. The perceptions of disabled people may mean that disabled people are unable to avail of the option. Do our guests anticipate a time when we can challenge that?

Mr. Peter Kearns

I thank the Senator. I am sure she saw the recent survey conducted by the Daily Mail. That poll showed that 80% of people support assisted dying based on terminal illness and life-limiting conditions. There is already a narrative out there of disabled people somewhat having a life less valued. It is an astonishing outlook. If you are a disabled person, you have to fight against this narrative every day. When I wake up in the morning and go into my en suite bedroom in lovely Leitrim, I do not look in the mirror and gasp because I still have cerebral palsy. It does not cross my mind. It only crosses my mind when I hear negative attitudes like, "If I was you, I would keep to myself." I am quite confident. I had the opportunity to grow up in Coolock, a working-class area.

Most of my friends who are non-disabled are in jail. As I have a disability, though, I got many supports to go to college. I could do whatever I liked. That confidence gives me the power to argue against this discourse, but many disabled people do not have the same confidence. The danger is that, in a society that is ready to support you and refer you for this option if you have life-limiting conditions, this narrative will sweep along disabled people, too.

Mr. John Dolan

I thank the Senator for her question on whether there are disabled people who would like to engage in this discussion. I have no great scientific knowledge of this, but I believe there are many discussions they would like to be engaging in prior to this one. It would be on the list for some of them at some point, but like most of us, the majority would never want this to be an active discussion for them. I will draw on what I said earlier, in that the stone in their shoe is about how to get through today and tomorrow. It is like bread-and-butter issues in politics.

Deputy David Cullinane

I welcome Mr. Kearns and Mr. Dolan and thank them for their evidence. Their opening statements made an important contribution. As Senator Mullen stated, they rightly focused on what they saw as the positives of what this committee could do and recommend and what the political system could do for people with disabilities to deal with the impediments and challenges that still exist in terms of denying them the right to live with dignity. The witnesses put to us an important set of challenges when they outlined those difficulties and impediments, which still exist for people with disabilities through no fault of their own and because the State has not stepped in.

Mr. Dolan made the important point that there was a distinction to be made between recommending legislative changes on assisted dying and making policy recommendations. Both opening statements gave us a list of policy recommendations that I hope will find their way into the report once we conclude our work. I thank the witnesses for that contribution. I do not disagree with any of their recommendations. As Mr. Dolan stated, we have travelled some road in respect of the UN protocol, but there is still a long road ahead. Many promises that were made have not been delivered on and many rights that have been enshrined in law have not been resourced or funded. We can legislate for rights, but if we do not fund them, they are of no real consequence to the people who want to be on the receiving end of them.

Given all of that, I wish to ask both witnesses a question that is pertinent to our role. We can make policy recommendations on living with dignity, which I hope we will do, but we also have to deal with the issue of assisted dying, with all of its complexities and difficulties. It is not easy for society generally to have these conversations. As Mr. Dolan stated, no one ever wants to be in a situation where he or she has to make that choice. Do the witnesses believe it is possible to legislate for assisted dying while putting in place safeguards to deal with unintended consequences? Is this something that their organisations have considered or have the witnesses personal views on the matter? Is it possible to put in place legislation that would allow for assisted dying while providing the safeguards for which many have called?

Mr. Peter Kearns

I would point to Mr. Dolan’s comments on legislation and policy. We should take the chance to examine policy. In areas of the US, for example, they provided access to suicide prevention for disabled people.

I refer to there being a strong suicide prevention programme run and informed by disabled people's organisations. In that situation, if people did consider assisted suicide, they would be directed towards a State-funded programme with disabled people at the forefront of suicide prevention supports. That is a policy that could maybe work with assisted suicides. That concerns the situation at the moment, however. As has been pointed out, a lot of policy has not come about with legislation. If there is assisted suicide legislation, then, we would like to see a strong emphasis on suicide prevention, an approach which would be run and resourced in conjunction with disabled people and organisations.

Mr. John Dolan

Two kinds of safeguards are needed. Reference was made to one, that of safeguards in the legislation, but I go for a belt-and-braces approach on this issue. The most important safeguard is people being able to see in their day-to-day living that the State is actively making it possible for them to be out and about and participating and doing things. It is a non-legislative safeguard. Having listened to me, as they always do, the members will not be surprised that the safeguard is what is happening outside of the legislation and that safeguard comes before the legislation. I know that is frustrating for folk who want to see this matter moved on legislatively.

Deputy David Cullinane

If I can interject, it is not frustrating for me at all because I value-----

Mr. John Dolan

I am saying it is frustrating for those who want to see-----

Deputy David Cullinane

No. I understand that point.

Mr. John Dolan

That is grand.

Deputy David Cullinane

I can also understand, however, the witnesses' position that there is a huge road to travel in relation to people with disabilities. "Give us a chance to have a bit of a life" was how it was put earlier. We have not given that chance to disabled people, and now they are being asked to give an opinion on assisted dying when we have not put the focus on assisted living. I completely understand that perspective.

Mr. John Dolan

Yes. I thank the Deputy.

Deputy David Cullinane

I have no difficulty with that and I do not believe that the question is being dodged. I have no difficulty with the answer being given. Notwithstanding all that, I was trying to understand whether the witnesses' organisations had had internal discussions in respect of a situation were this committee legislate for assisted dying if it brought about those safeguards.

Mr. John Dolan

That is grand. I am glad the Deputy brought this point up. That was the other element of his question. I thank him for bringing me back to it. What I am giving today are my views and experience. As a federation, we have not gone into this issue in any depth or in any way safely enough for me to be able to say that these are the views of the federation on this matter or that these are the three views, for example, found among our members on the issue.

Deputy David Cullinane

I thank Mr. Dolan.

Mr. Peter Kearns

The disabled persons organisations must be a priority part of this process and discussion. We have a strong mandate from our membership that DPOs should be a strong voice in this process.

Deputy David Cullinane

I thank Mr. Kearns.

An Cathaoirleach

I thank Deputy Cullinane. I call Senator Ruane.

Senator Lynn Ruane

I thank the witnesses for their presentations. I am glad Mr. Dolan referred to the safeguards being non-legislative. It is what I wrote down on a page at the start of this meeting when I was trying to understand this context. We considered having these sessions with the idea that witnesses would come in and give us an insight as to what safeguards would protect people if legislation were to be introduced. Having been thinking about this aspect over the last few weeks, and especially after I read the witnesses' presentations, the position I have come to is that I get it now.

I get that the safeguards are the other side of it. Then I have to go back to not wanting to delay one in favour of the other because you could be a long time waiting for the State to meet all of those needs before something else comes into play. I have that framed now in terms of adequate living and access to everything needed being a safeguard.

Deputy Kenny referred to circumstances where the committee might suggest that the use of disability as a potential ground for assisted dying would not be recommended. I cannot agree with that because it is too simplistic a view. It would contradict the other stuff around choice. You are creating a bubble around a group and removing all the other stuff spoken about in the context of choice. Choice in how a person lives and cannot just stop with how they die, even if they have not had the opportunity. That choice in death means less if they are without choice in life.

If the legislative framework were in place, I do not see how we could have a provision whereby disability would not be a ground because even some terminal illnesses are framed as disabilities. Somebody with diabetes can, in this State, access disability allowance. They may end up with organ failure, close to death and be then considered terminal. Heart disease is another example. Other things are considered disabilities. On the one hand, I understand the safeguards that need to be in place that are non-legislative in nature, but, on the other, I cannot support a system that carves out disability as a ground because it is problematic. How do you find a ground where the two are supported? We have not figured that out yet. The suggestions put forward, even by legislators, have not involved teasing out that matter. Do the witnesses believe there another way in which that could operate? I cannot imagine that either of the witnesses want the voice removed if the State were to introduce the legislation, because it would come down to the individual rather than the group of people under an organisation or under the umbrella of disability.

Those are my thoughts. I am thinking out loud. Do the witnesses have any comments?

Mr. John Dolan

I am trying to figure out circumstances whereby people with disabilities would not be brought into it. It is not because someone has a disability that they would be excluded. They might be included, but it would be because they have a terminal illness or condition. I have not quite figured out what was meant in this regard. I need to figure it out.

Senator Lynn Ruane

The terminal illness could be an extension of the disability.

Mr. John Dolan

Or it might not be.

Senator Lynn Ruane

Or the terminal diagnosis might. I am saying it might be. If you carve that out, you could have a terminal illness and a disability.

Mr. John Dolan

I have a disability. Tomorrow morning I could be diagnosed with something that has pretty much nothing to do with my disability, but I would still be a disabled person.

Senator Lynn Ruane

That is easier to figure out. The one that is harder to figure out is if you have a disability and the terminal diagnosis is an extension of that - it depends on the disability you have. The terminal illness comes as an extension, you have particular organ failure, for example, your lungs are giving up. They are all based on the disability, so I wonder how you create a framework that does not exclude them when they are associated.

Mr. Peter Kearns

If you look at the history of impairment labels, years ago, my impairment label of cerebral palsy was called spastic. Giving people labels goes back to 1836 and the British industrial revolution.

I do not know of any terminal illness that is not associated with a label. I think a lot of studies show that it is very hard to predict dying in terms of time and all that. I think we are identified with an impairment label, and that impairment label is hard to separate from disabled people. Even 40 or 50 years ago, it was predicted that people with my impairment label would die in our 30s, based on western clinical and medical science. Nobody would say that today. The problem is that impairment labels are very hard to define in terms of their relationship to terminal illness.

Senator Lynn Ruane

What I am struggling with is that it is very hard to think about a system that excludes people based on disability. It is also very hard to think of an assisted dying system that does not have safeguards outside of legislation. There is something we are missing in terms of being able to look at those things in parallel to each other, or as one thing after the other. It is something that still is not straight in my head, in understanding how to achieve that.

Mr. John Dolan

There is a bit of a conundrum, a tension and a conflict here. The first thing is to recognise that that is here. Working out how to get around that is the great skill of politics, is it not?

An Cathaoirleach

Senator Tom Clonan, please.

Senator Tom Clonan

I thank the witnesses for the evidence they have given here today. I am here as a Senator; I am not a member of this committee. I am also here as a parent of an adult child with a disability. Under the UNCRPD, I am actually mandated and compelled to speak to the lived experience of disabilities in Ireland. I have a question for the witnesses, but I ask the committee to be mindful that I do not have an ideological opposition to what is proposed by this committee. I do not view disabled people as being necessarily fearful or opposed to assisted dying. According to the research, which is mostly UK-, US- and Australia-based because it is English language-based, there is quite a diversity of views among the disabled population. One statistic stood out to me as being quite interesting. Only 4% of disabled persons expressed any objection or resistance to assisted dying. Let us just get that straight in terms of first principles.

Disabled citizens are citizens just like anybody else in this State, but Ireland is an outlier in European Union and international terms with regard to the positive statement of the rights of persons with disabilities. Ireland has not ratified all of the protocols of the UNCRPD. Ireland, unlike any other state in the European Union, does not have a legal obligation to treat disabled citizens or to provide them with the therapies, surgeries and supports that are necessary for them. That is why we have children in Temple Street who are not getting complex spinal surgeries within the therapeutic window. That is why we had a disabled child left in a room off an emergency department for two months.

When you look at our community in terms of how they view their rights being vindicated, and Mr. Dolan referred to having the right to life not in the received or previously used way, how can we have a fully informed understanding of how people in our community might meet that process or decision in their life? We have to disregard the research internationally in this regard, because Ireland is completely and utterly different from any other jurisdiction.

I put forward legislation last year, the Disability (Miscellaneous Provisions) Bill, that would have given disabled citizens the right to medical treatment, surgeries and therapies, and I was told before Christmas by the Ministers responsible that they were going to oppose it because they felt it would place an unnecessary burden on the State. Can you imagine any other category of citizen whose right to life and medical treatment would be considered an unnecessary burden by the State? That is the context or, as Senator Ruane said, the frame within which we have to view and locate this discussion and what the committee might recommend to the Government.

When Covid kicked off, there was much coverage of people in northern Italy struggling to get access to ventilators. For every eight ventilators there were in northern Italy, Ireland had only one. We have the lowest number of ventilators in the European Union. The HSE, therefore, came up with a triage system to be used if Covid proliferated. It decided that not everybody would get access to a ventilator and that some people would probably die. It came up with a triage matrix under which disabled citizens would die. As the parent of a disabled adult, I was terrified by this. At the time, as Mr. Dolan will be aware, I and others mounted a major social media campaign to have the HSE matrix changed. It was changed in Trump's America to take into account the rights of disabled citizens because they have the Americans with Disabilities Act, and it was changed in Tory Britain. It took our community and a really distressed campaign to get the HSE to change the triage matrix to allow for the fundamental human rights of disabled citizens. It is not even a medical model in Ireland, or a charity model or a social model. A social model of disability is built on fundamental human rights, and we do not have those in this jurisdiction.

Mr. Dolan said legislation makes no difference, but we are legislators. Why bother with Parliament or with a rules-based society? Does he think, and I ask the same question of Mr. Kearns, that before any legislative framework is put in place for assisted dying, we should vindicate people’s rights, fully ratify all the protocols to the UN Convention on the Rights of Persons with Disabilities, and remedy the defect we have in European terms such that disabled citizens will be given the same inalienable rights to treatment and therapies that every other citizen has?

I do not know whether I will get another opportunity to speak, so I will make this point now. There is a very big community out there, with lots of DPOs and disabled citizens, and more needs to be done on this.

Mr. John Dolan

Thank you, Senator.

Senator Tom Clonan

Frankly, I am very upset and concerned at some of the comments that have been made here. It would not be said about any other protected category of citizen in this country.

An Cathaoirleach

I want to give Mr. Dolan a chance to respond.

Mr. John Dolan

I hope I did not say earlier that legislation makes no difference. I was referring to legislation alone and safeguards in the legislation, and I then moved to practical measures to support people in their daily living to be able to live better. I mentioned four articles from the UN convention and said three of them use the word "enjoyment", meaning the right to feel the warmth of the rights in your daily life, while the other article refers to respect. It is about being able to see and feel the effect of having these rights.

I do not know what I can add to that other than that I keep coming back to the question of what has changed in the daily lives of people whereby somebody is able, in this committee or anywhere else, to make the points the Senator made, because they are parts of people's lives.

I will stick with that issue for the moment. I take the view that Ireland wants to do the right thing. It goes about it and gets sidelined politically on a more regular basis than I would wish in putting through the things that make differences to people's lives. We should not underestimate what people think and feel when there is nobody else around and when they have nothing productive and useful to be doing in their lives, and what they feel about what it is to be living or not living. That is a real issue. I am aware that the Cathaoirleach is pushing me for time but I say that the people who are not disabled and do not have a sense of the day-to-day grind of it will find it very hard to understand what that is like for somebody. When I listen back to what Rosaleen McDonagh had to say, I think she was getting to the heart of that in this discussion.

Senator Tom Clonan

I thank Mr. Dolan.

An Cathaoirleach

I thank Mr. Dolan very much and I now call Mr. Kearns to speak, please.

Mr. Peter Kearns

Senator Clonan touched on something with regard to disabled people. I agree that when they are asked, a very small percentage are concerned about assisted suicide. Our work with the DPOs and with disabled people only reaches a tiny percentage of disabled people. When we reach them and do a workshop on the social model, we separate those who have permanent disabilities which change one's whole life. These people say that they have permanent disabilities and that they will not be cured. There is no cure if the disability is permanent; they see this. One might say that I have cerebral palsy which is a major disability. We might view disabled people in a certain way, but I am saying that this is my life and my body. We want to move away from the medical model or the cure and towards the social model and living a barrier-free life. The sad thing is that most disabled people do not have that opportunity.

We definitely have a view on how the State is interacting with the UN convention. I worked on the UN convention years ago. I was embarrassed that Ireland was so far way behind African and Asian countries. The UN convention must be fully resourced to give confidence to disabled people in moving beyond their impairment to looking to fix the barriers for disabled people. At the moment that is a very small percentage of the population.

An Cathaoirleach

I thank Mr. Kearns very much. I call Deputy Troy to speak now, please.

Deputy Robert Troy

I thank the Cathaoirleach and our witnesses. I am conscious that I cannot fully comprehend the challenges faced by people with a disability in their day-to-day living. Thankfully, I got into a car today and drove off to Dublin and never thought twice about it. Disabled people who take public transport have to forewarn or ring in advance to tell the public transport authorities that they are taking this transport.

My questions come from my limited comprehension of the challenges people face. I thank the witnesses for speaking so freely and honestly with us today. Mr. Kearns referred to a poll in one of his answers to a colleague. He said that life-limiting illness was part of the criteria when people were asked if they felt assisted dying should be introduced or legislated for. One of the criteria was life-limiting illness, not just terminal illness. In that context, it is very important we have engagement with groups who are representing people with a disability or a life-limiting illness.

In Mr. Dolan's contribution he referred to the Disability Federation of Ireland as having more than 120 member organisations that are working with people with disabilities. What level of engagement did the witnesses have prior to their contribution today in terms of seeking the views of all those organisations on whether we should introduce or legislate for assisted dying and, if we should, on what parameters should be included?

Correct me if I am wrong, but from what I have heard today, Mr. Dolan and Mr. Kearns have said that while they are not averse to legislation coming in, they do not feel it is an area of priority for people with disabilities. The priority is to address the serious challenges people face currently to live a full and meaningful life. My understanding of what they are saying is that they have a very real and legitimate concern, which should not be labelled as scaremongering, that if we were to introduce assisted dying, albeit with limitations, it would lead to a normalisation of assisted dying. They have a concern about how that normalisation might play out to members of their community and I think we should listen to that very carefully.

Mr. John Dolan

In my opening remarks I said that I am comfortable about bringing my insights and thoughts. We have not had an opportunity. We can send out an email to people saying we have been invited to an Oireachtas committee and asking them for their thoughts. However, it is not that kind of an issue. It is not like asking if they think an extra increase in social welfare is good, bad or indifferent. This is a whole different area. It is going to take time to actually hear more fully. I have said a number of times that I have been working out of my own experience, observations and views. The one thing I would say is that, over all my years, the thing people most strongly mention and want is to be doing things and to be part of things. That is the life-injecting urge people have. It is in that context they get knocked back from time to time. For what it is worth, that is where I come to this.

At the start I said we are really good in Ireland at making sure people do not die from certain traumatic events such as accidents or whatever. We can look at the effort Ireland puts into making sure a baby is born and that it will be able to cry, and the efforts we put in for that infant to have a life.

There are babies being born now who would not have survived five, ten or 15 years ago. It is really what is happening after that, or not happening after that to put all the bits together. That is Senator Clonan's personal experience. There are people who become disabled during life, but there are people for whom every day of their life is a life living with a disability. We have to be very conscious of that. It is that normalisation. When everyone around you thinks the standard is such and such, so we are doing that, it is different from saying that is still not good enough. Where does the person on the spot stand up and say something is not right or not good enough? That is more than saying show me the rule book and the standards. That is the issue. It is a cultural issue. It is more than the rule book. I am leaning on Rosaleen McDonagh, and forgive me if I do, but I am thinking of how she expressed being marginalised for not looking, sounding or operating like other people "normally" do. An awful lot happens there that is not good.

Mr. Peter Kearns

On that, and with respect to what Deputy Kenny said and we came to before, we as disabled persons' organisations quickly organised a few forums for disabled people across the country and across impairments, including intellectual disability and acquired impairments. Our submission rests on that feedback. We also brought in speakers from the UK's Not Dead Yet campaign, which again is a DPO. We published a series of articles in a leaflet to our members. We, therefore, have had quite a long engagement with disabled people across the country and heard their concerns about the legislation or assisted suicide. We as an organisation have the confidence to back up the points we made in our submission that disabled people have concerns about the ideas around terminal illness and life-limiting conditions. Again, they are subjective phrases and we worry about the clarification of those phrases in the legislation.

An Cathaoirleach

I thank the witnesses very much.

We are moving on to the second session. Due to the fact we have another meeting following this in private session, I am going to be adhering rigidly to four minutes. That is, a question from a member and an answer from a witness is going to take four minutes per person. I am sorry, but I will be rigidly doing that because of our next meeting.

Senator Mullen will begin.

Senator Rónán Mullen

I thank the Cathaoirleach. It is important to say this committee may well choose not to recommend legislation if it believes this proposal would do more harm than good. I certainly believe that and I have been saying that for a long time. Some people think we will do more harm than good full stop. I do not want put words in the witnesses' mouths but what I am hearing from them is that in the absence of the entitlements and the rights, which are so lacking in their provision at the moment, it is very clear there is a particular vulnerability there to being negatively affected by any possible legislation in the absence of such rights being provided for, whatever about the principle. The witnesses have been scrupulous about not saying whether they favour it in principle or not.

The evidence of the opinion poll shows that this debate on whether to introduce assisted suicide or euthanasia is causing negative thinking. The poll proves it. We are constantly having this poll quoted to us to the effect that a majority of people are in favour of it, including in the context of life-limiting conditions. This debate is causing negative ableist thinking. Everybody in this room is aware of our ableist society and how people can be stigmatised, whether it is because of age, mental illness or other kinds of impairment or disability. It is beyond me how we could be considering an assisted death regime that will impact unequally on those coping with any kind of impairment, and how people who claim to be on the left could support such inequality.

I know she probably does not agree with me on what the committee should eventually propose but yet again I am in admiration of Senator Ruane's honesty. She puts it very clearly that we cannot talk about legislating in a limited way for some categories of people when, in fact-----

Deputy Gino Kenny

Senator Mullen is trying to twist something-----

An Cathaoirleach

Senator Mullen has the floor.

Deputy Gino Kenny

He is trying to twist what I said.

An Cathaoirleach

The Senator has the floor.

Senator Rónán Mullen

Of course there will be cases brought on grounds of equality, whether it is to do with mental suffering, irremediable suffering or disability. This is part of the vulnerability of opening up this whole debate. It has been made it abundantly clear, including by my friend and colleague Senator Clonan, in his impassioned and clear discourse on the subject here today, that we have so much to do, not only for persons with disabilities but also with regard to the care of people in advanced years, those with mental health challenges and the great need for improved palliative care supports in various areas.

We have heard enough about the gross injustices associated with euthanasia and assisted suicide regimes. The sooner committee moves on to the positive agenda, the better. Without commenting one way or the other on the principle the witnesses have made clear that they want to follow, which is the positive agenda of helping people to live well, it should be the business of this committee from now on. I hope I have not misrepresented any of their views in explaining to them what I have taken from what they said.

An Cathaoirleach

The Senator has not. That was a statement, not really a question. I will move on to Deputy Gino Kenny.

Deputy Gino Kenny

This is a very complex issue but I believe we can overcome the complexities of assisted dying and legislate for it. I hope the committee agrees on this. Public opinion is clearly on the side of legislating for assisted dying, not only in Ireland but also in Britain and other countries. We have to be cognisant of this. Not all people live well and not all people die well. In the latter circumstances, people should have a choice as to how they die. For me, this is a fundamental human right.

The New Zealand legislation contains a number of stipulations on those who cannot avail of assisted dying. These grounds are advanced age, disability and mental health. They are important safeguards, or whatever we want to call them. There was a debate in New Zealand on assisted dying. People had concerns. It was put to a popular referendum in New Zealand and a clear majority supported assisted dying.

As a committee, we have many choices. There are many avenues we need to go into and go down. There are people who would certainly agree with assisted dying in principle but they have concerns about A, B and C. When I speak to these people, I try to address these issues. Once we address the issues, the majority of people are comfortable. It gives them a sense of joy in some ways that they have a choice and a say in how they die.

That is an important narrative with this issue. It is a hard issue to talk about, regardless of what side you are on. We are here because it is an important issue. It is important not to conflate issues that have nothing to do with this issue. I am not saying this is happening now, but others have conflated this issue with other issues. To me, that is the most dangerous part. It is not assisted dying when it is legislated for. The dangerous part is when people start conflating the issues with all sorts of stuff, in particular around suicide and in relation to other stuff. It is extremely unhelpful. I think a lot of people see through that. We have seen that throughout other debates in Ireland, in particular around a woman's right to choose and marriage equality. Some of the stuff is regurgitated to conjure fear in those who may agree in principle but have concerns. I would never be flippant about certain levels of concern. I am saying, as a person who fully supports assisted dying, that it is not a carte blanche at all. This is about certain circumstances where somebody, in specific circumstances, should have a choice. It is as simple as that. Some people do not agree with that. That is fine. Some people will never agree with it, but it is not compulsory. Show me where assisted dying is compulsory. It is not. It is a voluntary decision.

Senator Annie Hoey

There has been discussion about the term "life limiting" being ableist and exclusionary. Do either of the witnesses know if preferred language is emerging within the disabled people's organisations or the disabled community, in Ireland or globally, for an alternative term that might be perceived as less ableist? Do they know of an alternative way to discuss that which is currently emerging within the disabled sector?

Mr. Peter Kearns

Instead of using the term "life-limiting condition", we would speak about disabled people - that is, people who are disabled by society. On assisted suicide or assisted dying, we see that as a reflection of the medical model of disabled thinking. People who have those impairment labels cannot have a life-limiting condition. The idea is that because you have an impairment label, it overshadows everything. When I work with non-disabled actors they are not concerned about the character, they are concerned about the character's impairment label. If they have a hump, do they walk in a certain way? It is quite obvious from polls, and Deputy Kenny is right, that 80% of people would vote for assisted dying today because they are caught up in a medical model and a narrative about impairments. Disabled people are fighting against that. It is not a level playing field. We already have quite a strong medical model narrative in this State. It is only since 2018 that the UN convention has been ratified here. It is only now that disabled person's organisations are calling it out. We do not talk to non-disabled people. We talk to disabled people and give them the opportunity to identify as disabled people, not as identified by impairments. Society in general is obsessed with fear-mongering about impairment labels. We think that the massive support for assisted dying is based on fear and bias.

Senator Annie Hoey

I thank Mr. Kearns.

An Cathaoirleach

Okay. Senator Lynn Ruane, please. I thought Mr. Dolan did not want to take it.

Mr. John Dolan

I will take it whenever it suits the Chair.

An Cathaoirleach

Take it now so, I am sorry.

Mr. John Dolan

Senator Mullen talked about the issue of that particular vulnerability. I think he has represented well what I have been presenting. That is my comment on that.

In response to Deputy Kenny, public opinion around disability has shifted in my lifetime. It has shifted on the back of seeing some disabled people being able to push themselves out there. I have seen it here in Dublin, people who were in wheelchairs, who bummed themselves up the steps of inaccessible buses and embarrassed the living daylights out of the provider. That is one example. The shift in public opinion comes afterwards. It is the "Oh, I never thought"; that is the way it happens.

On supporting people with regard to the issues they have, the issue that I have put here is not to say "it will address this or that". People want to see the change first in how they are able to live.

An Cathaoirleach

I thank Mr. Dolan for being brief. Senator Lynn Ruane is next.

Senator Lynn Ruane

I want to make a comment, and then I will have one question. I want to pick up on what Senator Clonan said on legislation not mattering. I think we need to clarify that. The conversation I thought we were having was about that legislation, in terms of safeguards, being siloed into assisted dying, and that is where the legislation exists. It is not legislation for disability rights and safeguards outside of that but that those safeguards are not isolated into assisted dying when thinking of people with disabilities. When I said "outside legislation", I meant this legislation but including all the other legislation that needs to be in place to give strength to assisted dying legislation, if that makes sense. I wanted to clarify that in case I misspoke.

I have one question for Mr. Kearns. In his contribution, he mentioned the personal assistance legislation, and also the fact that this committee is being resourced to do its task but that everything else that falls under that is not. I wonder then about the disability matters committee, and whether Mr. Kearns was including that in his contribution as not maybe having the same impact or output. Is Mr. Kearns saying that the work happening there does not contribute or maybe that it is not doing what it should do?

Mr. Peter Kearns

No. We just gave as an example our campaign for a personal assistance debating process. It did not get the same response as this committee. The Joint Committee on Disability Matters has been a fantastic support for us.

Senator Lynn Ruane

Okay.

Mr. Peter Kearns

Actually, I have been at that committee so many times, and it has been fantastic to get that State platform for the DPO narrative. We just wanted a specific personal assistance debate that did not get the same recognition as this committee.

Senator Lynn Ruane

Okay. So Mr. Kearns means from a public or support perception, rather than the Oireachtas participation.

Mr. Peter Kearns

Yes.

Senator Lynn Ruane

I get it now. That is all I wanted to ask.

Senator Tom Clonan

I welcome this discussion. This is one of the most important committees and initiatives that is under way in Leinster House.

With regard to death and dying, and the fear that it engenders, we have all had experience of death. I have seen my parents die, and one of my sisters die. I have seen my daughter die. In another life, I have seen innocent men, women and children being slaughtered. I have seen death in its slow iteration, and I have seen it happen quickly and catastrophically to people. With regard to a good or bad death, I would like to postpone my own for as long as possible, if that is possible.

With specific reference to disabled citizens, my question is this: how can you make an empowered, equitable and equal decision about death and dying when your fundamental right to treatment is not legally protected, when your fundamental objective circumstances of living in this jurisdiction are not guaranteed by way of legislation or, as every other country in the European Union has done, by full ratification of the UN Convention on the Rights of Persons with Disabilities? That is where my concern lies.

This is about those issues of the fundamental rights of disabled people. We have dealt with the fundamental rights of other protected categories in Irish society, for example, in the marriage equality referendum, the repeal referendum and so on. I would appeal to the committee to bear in mind that there has to be a first-principles recognition of the fundamental legal rights of disabled citizens to live a full, active and fully participative life, where they can self-actualise in this life before they are confronted at some point with having to make a decision, however supported.

I am not squeamish about it and I do not have any ideological issues around it, but when it comes to equity and equality for disabled citizens, I think those fundamental functional, legal prerequisites, have to be dealt with. There is an opportunity for the Government in whatever is left of its lifetime. It has set out in the programme for Government that it will fully ratify all protocols. There is an opportunity to do that and we have to exert pressure on it. For a Minister to say that to vindicate the rights of disabled citizens to medical treatment would place an undue burden on the State is a scandalous observation to make, and I think it places any Minister who would make such a statement in breach of the 1954 Act on ministerial appointments and their seal of office. It is an extraordinary statement to make.

That is the frame and context within which I view this very important discussion, which I welcome. I thank the Chair for allowing me to speak and for his latitude today.

An Cathaoirleach

Given the Senator’s experience, he is more than welcome, and any time that he is able to be here, we would be delighted to have him here.

I thank Mr. Kearns and Mr. Dolan for coming to the meeting. Their engagement has been very important and their life experience and professional experience have come to the fore in the questions and answers. We greatly appreciate their opening statements and their contribution here today. We have very important work to do. We are all only a cog in the wheel but we appreciate their cog in the wheel today because it is very important.

I will suspend the meeting and we will go into private session once our witnesses have withdrawn.

Sitting suspended at 4.58 p.m. and resumed in private session at 5.01 p.m.

The joint committee adjourned at 5.57 p.m. until 11 a.m. on Tuesday, 23 January 2024.