Ms Catherine Gallagher:

I thank members. I could probably stay on until 11.50 a.m. if that is helpful. I will address this issue further but will briefly answer the question on finance and disability. The cost of disability or the disability tax is huge. Members are probably aware of the cost of disability report that was published in December 2021. It found that the average additional cost of just being disabled or having extra layers of consideration for either an individual or a family can range from €9,000 to upwards of €16,000 depending on impairments, conditions or what one is dealing with, bearing in mind that the full rate of disability allowance is €208 as of the last budget, which amounts to about €10,500 a year. That is huge. I know we have a cost-of-living crisis. This affects disabled people and, often, their families, particularly when there is a disabled child involved. When I say "disabled", I am coming from the social model of disability, that we are disabled and disability is not a bad word. Being disabled is nearly a political statement. Saying that one is disabled is more of a verb than a noun. I am saying that I am impacted by things that can be changed but are beyond my control, in case there are any queries on how I am phrasing things. I am aware that we are all dealing with a cost-of-living crisis but disabled people have always lived in a cost-of-living crisis.

The barriers to employment are huge. It is a poverty trap. People think they would love to go for a job, whether it is part-time or full-time, but they will lose their secondary benefits. That is huge. We are losing out on so much talent. Sometimes, when I think about this for long enough I get really upset. People talk about the talent pool but we are not tapping into the full talent pool. How can we? People are petrified of Revenue and the Department of Social Protection. They live their lives in fear. This impacts the private freedom and liberty of how people live their lives. It impacts on who they choose to live with. This is mentioned in the UN Convention on the Rights of Persons with Disabilities. It is not something that we should have to worry about.

If I wanted to move in with my partner tomorrow, his income would be taken into consideration in a means test. I live by myself in an apartment. Just to be clear, we are not living together; however, if I were to move in with him, his income would be taken into account. I am referring to a lump sum. We are not married and do not have children. I would lose everything – a very private, personal part of my life that makes me extremely happy and is really important to me. We are both studying at the minute. We talk about when we would like to make the step of moving in together after our studies, in a couple of years' time. By the time our studies are finished, all going well, we will have been together seven or eight years. That is not something I should even be worrying about. Part of the reason I am breaking my neck to educate and make something of myself is that I hope that when I eventually get a job, I will be able to afford the cost of being in the vessel that I am. There is no guarantee with that. We know the precariousness of academic life and academic careers. I do not know where I will end up. I am keeping a very open mind on where I will go, be it academia or elsewhere. I would like to stay in academia because I feel I can contribute, but that is not something I should even be thinking about. Not many people are aware of that. Ireland is not unique in this regard. It is a matter I think about all the time but it is not something I should ever have to worry about.

The question of privacy and autonomy touches on my point. I might have mentioned during my previous appearance that we have to notify Departments about every decision we make. In my university alone, I probably have to deal with three to five different offices or sections of campus life before even dealing with my housing and finances and so on. The privacy and autonomy element is considerable. Again, this is a matter I will be happy to elaborate on in other forums or at other times.

Living with privacy, dignity and discretion is a privilege. I wish I had it. The whole kerfuffle over scholarship funding, as I describe it, has led to "Catherine's law". Towards the end of my opening statement, I touched on the very intense few weeks I had when I shared my story. Deputy Conway-Walsh was of great help to me at the time. I am in her constituency. Deputy Dillon and Senator Lisa Chambers were also of great help. From a political perspective, it was really interesting. From a cross-party perspective, there was little resistance on the issue. From the three individual Members, and also more behind the scenes, I came across very little resistance. It would make for a really interesting case study on cross-party support, if you were even to consider it like that. I am still appreciative of the help with the legwork.

The impact, on which I have had time to reflect, was huge. Not only was I talking about my experience of being a disabled person, which in many ways I am very open about although I am a little more careful about what I share now, but I was also talking about my finances and financial circumstances. That was such a killer. It was so grim. I do not like talking about money. It is not that I come from a place of money. Maybe it is an Irish thing or the way that I am. I do not ask people the price of a pair of shoes they bought. I do not talk to or ask people about money. It is not a topic I usually go near. Suddenly, it was what I was talking about. I was talking about potentially being on the poverty line or losing out entirely on an opportunity. After that, although I had many amazing opportunities to read reports and speak, including on panels and focus groups, I was catapulted very quickly into doing that kind of stuff more regularly, including voluntarily in my spare time. This year, I have to be really cognisant of my mental well-being because the cracked, fun, creative side of me has taken a back seat. I forgot for a long time that some people actually think I am relatively humorous. Everything was kind of funny. I was talking to somebody the other day who laughed at what I said and I thought that I actually have characteristics that are not just related to all of what I am talking about today. While I am very appreciative of what has been done – I have made some amazing connections and friends – I believe the impact on me has been huge. I am really prioritising bringing the spark back this year as much as I can, given all my other commitments. The impact has been huge and I am very cautious about that now.

On privacy, autonomy, media space and voices, the trajectory up until now, although I still think there is room for improvement, is that disabled people have been spoken about and not spoken to. That has been my life story. We are spoken about as if we are over there. We are regarded as the vulnerable, over there, in a house or wherever. We are regarded as the disabled, the vulnerable or a subsection of society rather than part of human diversity and as people who should be celebrated.

When it comes to representation and the question of whom we are listening to, there are four points I would put to people. I would welcome it if they reflected on them. What has been people's perspective on disability until now? What word would they use to describe disabled people? Until now, what voices have they tended to hear from in their work and personal lives, and obviously in the media, considering that the media are very significant? Who was in the room or virtual room, and who was not? Who do you have? Are representatives of disabled persons' organisations present? Are disabled people there? Who has influence in the room? You can have all the right people at a meeting but some will always shout louder. Some groups have had more of a handle on the narrative for a long time and are uncomfortable when disabled people come into the fold and say what they are experiencing and what it is like from their end. It is about including everyone, not about putting anyone out. It is about giving the lie of the land and stating one's experience. Although you can have all the right people in the room, including a disabled person or representatives of a disabled persons' organisation, what are you doing if what they say is not taken on board? Those are quick-fire questions that I use when speaking in these spaces.

Transport in rural Ireland is a major issue. Some members might have been on their holidays in Achill, where I grew up, and maybe they have checked out our greenway.

I will be in Dublin all of the time now because I am researching throughout the summer but, when I was an undergraduate student, I found leaving my student accommodation and going home to Achill in the summertime really hard because I do not drive. I am working on that this year. It is one of my goals for this year to see that through and get my driving licence. Getting through that will be a whole other thing I will have to figure out. Achill is a place where you cannot get around and have to rely on your family to drop you off to a coffee shop and to pick you up again. There are no real connective links in Achill. You feel like you are a teenager again. It is very infantilising and can get quite lonely. "Disempowering" is probably a very polite way of describing it. You are stuck in the house. My family home is not within walking distance of anything. I am sure this is not just my experience and that older people and others who do not drive have similar experiences. It is not unique to me. I recognise that I am not saying anything new here. That is one of the reasons I decided to move back to Dublin in September. I decided it was time to move back because it was just too quiet. I could not buy the paper, a magazine or a bottle of something. I would have to ask my mum to get me a bottle of something to have when I was watching the telly. It is just not nice.

While it may not be other people's experience of personal assistance hours, my experience has been that, if I am in my family home, I do not get hours. That is the set-up I have. For some reason, that is the way it is for me. It is when I am living away from my family that I get personal assistance hours to help me to live independently from my family. That is also crucial.

I have a few minutes left on my end. If I do not have any time left on the committee's end, I hope someone will let me know. The barrier to employment is very significant. Deputy Tully is probably familiar with the Disabled Artists and Disabled Academics, DADA, campaign. Emilie Conway has been very vocal on this. Disabled academics are in a similar boat to disabled artists as regards precarious work. I am not sure it is even possible for researchers to get full-time contracts early in their careers. You go from semester to semester. You might get three months' work here or a grant to a bit of research there. You might get a semester of teaching. It is higgledy-piggledy. That is the only word I can come up with at this moment. The precariousness of work for academics is very much an issue. I am happy to talk to anyone who is interested in this at another stage. Before I forget, I am very happy for the clerk to share my contact details with anyone who wants to get in touch at any stage.

On the medicalised model of disability and the way we describe things, as I said in my opening statement, words can heal and words can hurt. Things are often said and done with the best of intentions. Last night, I was thinking about how I would describe this. All of my life, I have come across things that have upset me and things have been said to me. People have come up to me at weddings to ask whether I would not think about living with family for my first year rather than living on campus and whether I would be able for it. I got a lot of this the summer before I first started college. I went to two or three weddings and got a lot of it. I would come home and tell someone what I had heard, what I had been told on the dance floor or how I had been pulled aside. I felt like I was the only disabled person in the village. People might feel that they could touch one's wheelchair without asking. For me, the problem is being asked questions on things that are no one's business but mine. The response I get back is that they did not mean it and that the question was coming from a good place. When you have been hearing something for 25 years and are just told not to worry about it because it is coming from a good place, something has to give. I cannot have another 25 years of it. It takes an awful lot of mental energy and energy in general to be considerate. I would like to think that I am a considerate person and that I do not jump the gun but it is tiring and infantilising. That is probably the best word.

The best way to counteract this or to bring about cultural change is to link in with disabled persons' organisations, DPOs, because this is something on which they have consultations and working groups. It also means that you are talking to a group of people rather than one or two so the emotional labour involved in talking about these things is not so strong. Linking in with DPOs is something I would suggest, as is just thinking about it. Like I was saying, swimming lessons for Johnny is hydrotherapy for Mary. Music lessons for someone is music therapy for another and so on.

There can also be joy. One thing I have been learning about, particularly over recent years, is disabled joy and disabled pride. There is joy in my community and in my experiences. There are many parts of me. The trajectory of the decisions I have made have certainly been partly informed by being disabled. There is no getting away from that. Some of those decisions have been really good decisions for me and really worthwhile. There is joy, craic and laughter. Disabled people and disabled children can have joy. One of the words I have nearly banned from my vocabulary is "battle". I know why people use it and it is a word I grew up with. People talk about the battle, the fight and the struggle. This is all very true and I am not dismissing it but, when you think about it, why are people using that language of war, although I am not saying they should not? Why are people using these really strong words? It is because the root causes lie in the system. It is not the fault of the family, the disabled child or the disabled person. It is the way things have been done. I do not know about the members, but when I am going about my daily life, I do not want to feel I have to describe just getting a bus as a battle. Why am I describing it in that way? It is because the root cause is not my issue. I know I am nearly out of time. People resort to things out of fear and desperation.

I spoke about human interest stories in the media the last time I came before the committee so I will not elaborate too much but we should be conscious of the implications of families sharing stories of children. As I said in my statement, I am not blaming anyone. I believe that is really clear so I waste time saying it.

The implication of that, however, is that it is creating a digital footprint that cannot be taken away. Articles in which I participated three or four years ago will be available on Google forever even though I wish I never did them but at least if I Google my name, there is nothing from when I was six or seven years of age. There are no pictures me or anything like that. I am not blaming anyone. Why do people resort to speaking to the media? They do so out of pure desperation. We should not think it is a normal thing to do.

I thank Deputy Conway-Walsh for her question on SUSI and part-time study. It is an important issue. Part-time study is also important for parents and care givers, not just for disabled people. It is an issue, too, for postgraduate and PhD level research. It is very difficult to get scholarship opportunities for a PhD on a part-time basis. As I stated, when we do not facilitate, we are losing out on the talent pool. By not allowing more opportunities for part-time study and research, one is missing out on the talent pool.

My needs and those of other people are not special. My needs never have been special. I am not a special needs individual. My needs are particular and clear and when they are facilitated I have the opportunity to live my life with peace and dignity and might not have to worry about with whom I live and the implications in that regard for my finances. This is run of the mill stuff. None of it is new to me but I am aware that I discuss it regularly. I speak to disabled people about this quite a lot.

Disabled people are looking for a foundation; a basis for living life with a bit of discretion and dignity. They are looking for the foundation to have an ordinary life. That needs to be facilitated, supported and understood. Our worth needs to be understood. We should not feel that we have to remind people that we are worthy of being in the classroom or other room, or being the teacher. One of the things I am doing in my teaching is letting students know that their tutor or lecturer is very cognisant of accessibility and to let me know if they have any queries in that regard. I never had that experience as a student. We are seeking to be supported to live an ordinary life. Once that foundation has been provided and we have the tools, ability and understanding to have an ordinary life, it is up to us to make it extraordinary. I will finish on that note. I thank members for their questions and for bearing with me.