Joint Committee on Disability Matters debate -
Thursday, 3 Feb 2022

Equality and Non-Discrimination: Discussion

Chairman

The purpose of today's meeting is to discuss equality and non-discrimination. On behalf of the committee, I welcome Ms Elaine Dennehy and Ms Anna Levin from LightAware and Ms Finola Cassidy and Ms Jacqui Browne from the Irish Thalidomide Association. I am not sure whether Dr. Angela Unufe-Kennedy from the Migrant and Minority Disability Network Europe has joined us.

I remind members that they are only allowed to participate in the meeting if they are physically located in the Leinster House complex. If members are joining remotely, I ask that them to confirm that they are on the grounds of the Leinster House complex prior to contributing to the meeting. For anyone watching these proceedings online, witnesses or anyone accessing the meeting remotely, due to the unprecedented circumstances, I ask everybody to bear with us if any technical issues arise.

I understand there are some issues with Microsoft Teams this morning. I ask the representatives to bear with us.

On privilege, witnesses are directed that only evidence connected with the subject matter of these proceedings should be given. They are asked to respect the parliamentary practice to the effect that, where possible, they should not comment on or criticise any person or entity by name or in such a way as to make him or her identifiable. I wish to advise witnesses giving evidence from a location outside the parliamentary precincts to note that the constitutional protections afforded to witnesses giving evidence before the committee may not extend to them. No clear guidance can be given on this. Persons giving evidence from another jurisdiction should be mindful of that statutory regime. If witnesses are directed by the committee to cease giving evidence on a particular matter, they must respect that decision.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the House, or an official, either by name or in such a way as to make him or her identifiable.

I call Ms Dennehy to make her opening remarks.

Ms Elaine Dennehy

I thank the committee very much for this opportunity. I also hope that this can help, in many ways, the others who are suffering around the world from light emitting diode, LED, sensitivity and artificial light sensitivity. I have been made ill from LEDs since 2007. It is more than a sensitivity; it is a disability. I am disabled by my environment, like so many others, and excluded from society. This is also an accessibility issue.

It makes more sense for me to start from today and work my way back, as briefly as I can. In doing so, I hope committee members will understand the enormity of the situation and the devastating impact it is having on my life. The straw that has broken the camel’s back is the change over from halogen to LED traffic lights and pedestrian lights, in addition to the newer driver feedback displays in our town. LED is continually evolving and this new form is something my brain cannot cope with. I cannot get into town. If I do so, I will suffer the consequences. It only takes a moment’s exposure to these particular LED sources, even from far away, for the pain and symptoms I experience to continue to escalate for up to two days.

The most distressing symptom from these newer sources is a burning sensation in the occipital area of my brain. It does not start immediately and it builds in the hours that follow. It is a chain reaction and not just a moment's discomfort at the time. This is the final straw as I am already in constant pain on a daily basis due to the LED in my environment from passing cars, farm machinery working in the fields around me with flashing LED beacons or neighbours near and far with outdoor lights on during the day. Even some LED lights inside others’ houses are problematic. Wavelengths of light travel many kilometres. They are visible and invisible. We can see LED from space so it makes sense that someone sensitive, like me, is affected from hundreds of metres away without seeing the source directly.

If someone told me this would be my life 14 years ago, I would have found it very difficult to believe. I can only speak about my experience but there are so many others in the same boat. It first started in 2007, when I opened a mini Nintendo DS game backlit with LED. I was immediately ill and ran to the bathroom. I had got a searing headache that quickly escalated to migraine with eye pressure. LED was easy to avoid then and I did not think much more about it. I travelled in Australia for two years after that, where there were a few supermarkets I could not go to due to the overhead lighting from which I experienced similar symptoms. On my return in 2009, I could no longer find a phone or laptop without LED or sit in some newer cars due to the LED dashes.

LED slowly crept in to most environments and by 2014 the monitors in my workplace were changed to LED. I could not tolerate them for a second. I was already working under LED lighting and living on painkillers and anti-sickness tablets. I thought that if I somehow could just keep going I would become immune, but I was wrong. I only got worse. I had no choice but to leave my job once the monitors changed. That same week, in December 2014, the sodium streetlights outside my home changed to LED so I was confined to my house at night for a year.

I moved to the countryside in late 2015 and now I find myself in the exact same position again. Due to the phasing out of all other light sources, most neighbours have gradually converted to outdoor LED. I have not seen the night sky in 16 months since September 2020. Before that, I was confined to particular areas in my garden and it would have to be for brief periods. I am now confined to the house for up to 18 hours a day in winter, with blackout material covering the windows as the wavelengths of light from distant lights come in around the blinds.

It has been many years since I have been able to go to a bar or restaurant. Shopping for essentials is as quick as possible since intense diodes lining the freezers and LED monitors on most checkouts add to the pain, but now none of that is even possible. Due to the changeover to LED pedestrian and traffic lights, and the newer feedback displays, I cannot get into town. I cannot get out of my area and into the next villages for the very same reasons. I am stuck in limbo. I am trapped on the outskirts of the town between villages. I cannot get to the GP, the vet or the shop. I am excluded from the park, the church and visiting my parents’ grave.

My eye health is perfect and I do not need sunglasses. The problem is neurological. The LEDs of today are very different from any other light source. I have been living in lockdown for many years. Most people know the relief that was felt with the easing of Covid restrictions and the toll they have taken on everyone. I may never experience that relief, as is the case for people like me who are in constant lockdown. I am exhausted. My lockdown may never end. I experience ill health around all LEDs, including blocked ears, ringing in my ears, eye pressure, head pain, headache, head pressure, nausea and migraine. Migraine is a complex neurological condition and one of the most disabling worldwide. Even a person using their phone, or their LED watch, near me can cause symptoms. What I endure from LED traffic lights, LED pedestrian lights and the newer feedback displays is intolerable. It is not worth the exposure.

A life of isolation and lockdown is the only alternative if something does not change. It is not acceptable for me or anyone to be forced to live like this for the next 50 years due to an artificial light source that has not been adequately tested. We cannot say with certainty that LEDs are safe for everyone. Life is passing me by, I cannot work or travel and I cannot visit friends or attend special occasions with family. I cannot take part in recreational activities. Some days are a complete write-off. If there are LEDs on nearby or in the distance, the pressure just continues to build in my head. I must cover up my windows again or go to a dark room. I am impacted from the minute I wake up until the minute I go to sleep. The effects are cumulative so I have to weigh up what I can tolerate; it is a negotiation.

Nothing in my life is left untouched by LEDs. Over the past few years, I have been trying to limit exposure and retain some quality of life, even though that meant being locked down at night and excluded from indoor spaces during the day. I had been scraping by, through travelling into town during quiet periods on brighter days, getting in and out of essential services as fast as possible and not stopping to speak with anyone. It was a lonely, isolating life, but now none of that is even possible. Streetlights and floodlights are generally off during the day, but there is no negotiating LED traffic and pedestrian lights and newer feedback displays. I use a 14-year-old Nokia phone and a third party has helped me to connect a modern laptop to my old TV today so I could join this meeting.

The problem is global. It is not just a concern for those who are immediately affected, like me, and are locked in blackened out homes. We do not know the long-term consequences of this light source. Senior medics have been raising concerns for years. I know people all over the world, some with perfect vision, who are getting around with blackout glasses and a walking cane. How is it morally okay to enforce a product that causes so many people ill health? The phasing out of all other light sources raises concerns for the human rights of those affected by LEDs. How do we live our lives?

Solutions to allow me access to the town during the day would include simply retaining halogen traffic lights and pedestrian lights. The bulbs are still available and the phase-out only started in September 2021. It is possible that they can be stockpiled until we know more. The older driver feedback displays on our local roads could be easily swapped with models from towns further afield. The older models were installed less than three years ago and cause me no adverse reactions. I ask to be consulted in advance over any changes so that I am not living on edge that something will change in my environment and I will need to suffer for days. Should our councils be doing impact and disability assessments before making changes on our public roads, as is expected in other countries?

I also want to mention that I understand the transition to LEDs is being done with good intentions on the basis of energy efficiency, but this adds to the frustration. Something can claim to be economical due to one measurement, but LED light is not what we believe it to be. We have not achieved what we set out to do. It was expected to generate a drop in energy consumption and light pollution, while research shows us that what is happening on a global scale is the opposite. Ecologists tell us LED light is having a devastating impact on the ecosystem, insects and wildlife. It could also be classed as hazardous waste due to the copper and nickel it leaches into landfill. It is using rare earth minerals and putting pressure on natural resources. It is not just the production process. LEDs are difficult to recycle. Even more resources will be used to recover valuable materials, if measures can eventually be put in place.

Finally, on 9 November 2021, the European Parliament's Committee on Petitions met to discuss three petitions submitted by a man in Germany regarding LEDs.

The committee called for it to be referred to the EU's IMCO stating, "Experts in medicine do raise alerts concerning the damage LED can cause. We need to be alert to what could happen." The EU's Scientific Committee for Health, Environment and Emerging Risks, SCHEER, 2018 report also acknowledges this technology is new and not enough research has been done yet.

New legislation has just been passed in 2021 to allow sensitive people like me obtain incandescent bulbs to light our homes. LightAware lobbied for this for many years. The bulbs are for domestic purposes. This is an acknowledgement in itself that something is not quite right with LED. However, how do we access civic life?

In 2017, researchers at the Massachusetts Institute of Technology, MIT, showed that we can use incandescent bulbs and they can be four times more efficient than LED. Healthy light is an important ethical issue. Nobody should live in pain and suffer social exclusion due to an artificial light source.

Chairman

I thank Ms Dennehy for that wonderful presentation. I call on Ms Finola Cassidy to give her presentation.

Ms Finola Cassidy

I thank the Chair and members. The Irish Thalidomide Association, ITA, welcomes the opportunity to be here today. I am the spokesperson for the ITA and I am joined by my fellow survivor and committee member, Ms Jacqui Browne. We thank the committee for the invitation and this great opportunity to tell it, from our point of view, what is going on.

The ITA represents the majority of about 40 survivors of the biggest pharmaceutical tragedy the world has ever seen who live in Ireland. The drug, thalidomide, when taken for morning sickness, crossed the placenta barrier and damaged the baby in the womb. We are thalidomide "survivors", but we do not use that word lightly and the committee will understand why.

During the period 1959 to the mid-1960s, of the 100,000 babies injured in utero, 90,000 died as miscarriages. Of the 10,000 babies born, 5,000 did not survive the birth or their first year of life due to their catastrophic injuries. Today, 60 years later, there are approximately 4,000 survivors worldwide. In Ireland, we number approximately 40 survivors, which includes both acknowledged thalidomide survivors and yet to be acknowledged survivors, who we call "the unacknowledged".

It is a recognised medical fact that the late sequelae of thalidomide-related damages has brought a crop of unplanned, unprecedented and acutely painful further injuries over the past 60 years. That is because of the overuse and misuse of our disabled limbs, missing limbs and shortened limbs, etc. These ongoing injuries, along with the progressive internal damage that we have, as well as deterioration in our nerve endings, have resulted in many of our members living with daily and chronic pain.

The UN Convention on the Rights of Persons with Disabilities, UNCRPD, provides a unique opportunity to improve the quality of life of disabled people, which includes Irish thalidomide survivors. Article 5.1 of the convention seeks to recognise that all persons are equal before and under the law and are entitled to equal protection and benefit of the law. Thalidomide survivors have been failed by this ideal, now and in the historical aspiration of Irish State law, when the child was purported to have the protection of the State.

It is difficult to understand how the non-ruling by the High Court of payments in the mid-1970s to Irish survivors, who were about 12-years-old at the time, happened, except to say that the State knew the court was unlikely to rule the settlements as adequate for catastrophically disabled children. In the spirit of Article 5, at least in more modern times, the High Court ruled that an offer of €62,500 to one of our members with severe intellectual and physical disability was wholly inadequate.

Article 5.3 of the convention is, to some extent, covered by the provision of reasonable accommodation for persons with disabilities under the Equal Status Acts. For the purposes of these Acts discrimination includes a refusal or failure by the provider of a service to do all that is reasonable to accommodate the needs of a person with a disability by providing special treatment or facilities, if without such special treatment or facilities it would be impossible or unduly difficult for the person to avail of the service.

While I have a number of examples of this failure, I will just mention a couple of basic ones. My first examples are the taking of blood samples in hospital and the taking of blood pressure. When we present ourselves to doctors or hospitals, in particular, any medical professional person trying to take blood, blood samples or blood pressure from a person with no arms is faced with an immediate challenge; likewise, with our shortened arms. The blood pressure machine does not work on our limbs. Therefore, there is a challenge. We have concrete evidence that survivors have been refused blood tests because staff in some public hospitals are not insured to take it from other parts of their bodies, such as legs. Similar issues have arisen in relation to blood pressure and other medical devices to assess what our problem is and how ill we are. Sadly, one of the most painful things that a thalidomide survivor undergoes is giving blood samples. The nerve ending damage adds enormous pain to these simple medical necessities. This process and, indeed, many medical procedures cause absolute terror and anxiety to our thalidomide family. This is because we remember the trauma of years of medical intervention and investigation into our unique bodies as children, and that has left a legacy of fear in our adult life. It is extremely hard in a chronically understaffed health system to expect the medical professional to deal with us adequately when we just walk in.

Our health and care system is extremely fragmented; it is disease-centred, difficult to navigate and does not consider the whole person. As a result, many thalidomide

survivors have experienced poor quality care, often in the wrong settings and with undesirable outcomes.

There is also a significant variation and inequity in the way that services are organised, especially geographically, with unco-ordinated appointment scheduling, a lack of communication between providers and a frequent lack of capacity and resources within the required services.

Thalidomide survivors need a continuum of services, according to our unique needs over time and across different levels of the health system. For healthcare and support to be integrated, it must be person-centred, co-ordinated and tailored to the needs and preferences of the individual. This means moving away from episodic care to a more holistic approach to meeting our unique health and support needs.

The recent cost of disability research report published by the Department of Social Protection states that there are significant additional costs faced by individuals with a disability and that they are currently not being met by existing programmes or disability allowances. On average, a disability can cost a disabled person from €9,600 to €12,300 per year.

Taking the 40 Irish thalidomide survivors as a microcosm of all that Article 5 and, indeed, the aspirations of the health service in Ireland aim to achieve, never has there been a more perfect example of a group of disabled people - a small group - now in their 60s, who have experienced significant barriers and inequality in their lifetime.

Chairman

I thank Ms Cassidy for her contribution. We will now go to members for their comments and questions, and then we will come back to the witnesses. I call Senator Mary Seery Kearney.

Senator Mary Seery Kearney

I thank the witnesses, as it is a very difficult thing to speak in public about their lives and life experiences. I lament that it is necessary. I appreciate how courageous they are today and the nerves of being in a forum that can be seen on television. I thank them most sincerely for that.

We have two very distinct groups here today. However, we have a commonality of experience, in that there is a lack of accommodation and proper provision for "minority groups", to borrow a term from my own area of employment law, where we have a small distinct group that has distinct needs, and yet these needs are not being accommodated.

I will first turn to Ms Dennehy. In the course of my political career, canvassing doors, I came across a lady who had a similar lived experience. I had to put away my mobile phone and divest myself of everything to go into her home and sit and chat and listen to her. It is a challenge to try and describe it to people outside that environment to get them to believe and accept that this is a reality. I welcome this platform and others. I am glad to see that it went to the EU. We need to take seriously people's experience. While Ms Dennehy's experience is of a more pronounced reaction there is probably a sliding scale of people who do not even realise that they are affected by LED devices. They might dismiss it as migraine, headaches or mild experiences. I would be interested to hear from Ms Dennehy and Ms Levin what we can do to accelerate that. I have raised it with the joint committee on housing because that includes local government so there is a conversation going on behind the scenes there. However, what would Ms Dennehy like from us? Obviously, we need testing before there is a national or international roll-out of any system. How do we ensure that testing where there is a small minority affected? How do we bridge that gap? It seems to me there is a shortfall in our test to establish symptoms and experience as a disability in order to empower people with the ability to have even a legal claim. I would be interested in any advice that Ms Dennehy could give on that.

I thank the Irish Thalidomide Association so much. Its recent campaign at the Leinster House gates in particular brought home the association's case to everyone. There is a direct connection between that day and today in airing its views. I am horrified by its members' experience. Ms Cassidy picked an example with blood testing and blood pressure that is so everyday for everybody. It was exactly the right example to capture the survivors' experience. I want to acknowledge that there is no such thing as post traumatic stress disorder, here, it is stress disorder and trauma all of the time. From reading, documentaries and my attempts to educate myself over the years, I can only imagine what might have begun as test cases, ignorance and a life-long experience of that. They are still experiencing it. I do not understand how we do not have a specialist thalidomide care unit that can go on circuit around the country in order that a small group of specialists could come and visit. As we can get the High Court to sit in circuit, I do not see why we could not apply that to medical care to make sure we have that universality of experience wherever people are living in the country. The patients should not have to come to them, the services should come to the patients.

We are airing the issues but we need to turn it in to practical things that we seek. What would the association like the committee to call for? What would it like us to highlight? From my experience, this committee will be more than delighted to do that for it.

Ms Jacqui Browne

I thank all the members for the opportunity to present before the committee today. Ms Cassidy expressed the concerns and issues and highlighted the main facts for the thalidomide survivors very well. The Senator asked what the committee can ask for on our behalf. There are three key things. Despite Article 5 of the convention and measures in Irish law, which was referred to, we still do not enjoy reasonable accommodation to enjoy a life of equality and equal access in Irish society. I can give further examples to the ones which Ms Cassidy gave earlier. Access is an issue. Many disabled people do not have the right car or mobility transport and do not have the appropriate adaptations in their homes despite making applications and seeking such supports. There are also people who are still fighting for justice in terms of access to appropriate medical supports and interventions but geographic issues get in the way. I will give a practical example which is not unique. Take someone who has a medical card. We were meant to have the medical card since 1975. It was given to all thalidomide survivors irrespective of means on an ex-gratia basis, that is, not on a statutory basis. The problem is twofold. First, some thalidomide survivors are still working. Most of us are not. Those who are not working tend to hold onto the medical card but those who are working and are in receipt of an income beyond the means are being denied their full medical card. Even if you have the medical card, it can be difficult to get supports. For example, I live in Kerry. Some of the specialist supports that I need simply are not available in Kerry. I fully appreciate that. With respect, bringing the specialist units to Kerry will not work in some scenarios because the equipment and everything else is in Dublin so sometimes we do have to go to the centres of excellence, where they exist. Getting the team to travel around the country is not a quick-fix solution. If it was that simple we would have done it a long time ago.

The problem is the medical card. For example, I had a very long fight, a ten year fight, with all my dental and oral issues, having that accepted. Obviously, I went for treatment over the ten years to the Dublin Dental Hospital and paid out of my own pocket but I fought tooth and nail for a reimbursement of that. However, it was a long fight and no one else was going to do the fight for me. Why should it be up to people like me? I am fortunate; I do have the capacity and am like a dog with a bone. I will follow things up and follow the procedures but that should not have to be the case. I am using myself as an example because it is my example and I can use it. I know there are other instances of this geographic issue around accessing supports outside of one's county or health authority area or whatever other language they are going to put on the regions. We currently have community healthcare organisation, CHO, areas, there is talk of local community care areas. The language changes but does the service change? To highlight that need for access would be great. The committee could call out inequity of access and highlight the need for a genuinely full medical card and access and the problem of the inequity around reasonable accommodation. That is a matter that is particularly crucial for thalidomide survivors. Housing adaptation can be unique to everyone but especially thalidomide survivors. The supporting documentation that we sent to the committee gives a perfect example where a professional expert was in someone's house and trying to enforce on them their opinion of what they thought the survivor wanted when the survivor did not want that at all. We need to be listened to and respected. It goes back to what Ms Cassidy said of the person-centred approach. There are specialist supports available in other countries, such as Germany. We need to have access where appropriate to either bring in external supports or that we can go for European supports ourselves too. Those are the key things that I would highlight. To enjoy equality sometimes we have to be treated differently. That is a reasonable accommodation measure under Article 5.3 of the convention.

Ms Anna Levin

I will respond with and for Ms Dennehy.

I think Ms Dennehy is asking for something very specific in this instance, that is, help with dealing with these traffic lights and displays which are described as the last straw for someone whose life has been ever more restricted. We have been in touch with Ms Dennehy for about five years and we have just seen how that noose has been tightening and that pressure has been increasing. She had to move out of town because of the streetlights. She could not go out because of the neighbouring lights. Now she cannot get out of where she lives because of these traffic lights. She is quite clear what she needs is help and a mechanism by which the older version of these lights and displays can be retained in the area around her and that there is support and advocacy for that.

That is one specific request but it is part of a bigger issue, namely, acknowledging Ms Dennehy is light-disabled and that light is a disability issue. People like her are unable to work, socialise, access education or healthcare or really participate in society. We are in touch with people all over the world. In some countries, like Britain where I am, people are using the Equality Act, in some areas, to access and retain the lighting they need. In Germany it has now been acknowledged as a disability and one individual has been given assistance so that if he cannot drive, he can be taken or accompanied to places. This is a really big issue that is happening all over the world. I feel what Ms Dennehy needs most is advocacy and a mechanism she can go to for support and to find how she can get help because, as the representatives of the Irish Thalidomide Association said, it is not always for the people suffering to be the ones campaigning. People who cannot use computers or smartphones like Ms Dennehy especially need somebody they can go to when they have a problem with something who will help access the help they need.

Chairman

I thank Ms Levin. I call Senator McGreehan.

Senator Erin McGreehan

I wish everybody a good morning. It is good to see them all here this morning. I have two questions that I will go straight into because I want to hear as much from our guests as possible. Ms Cassidy mentioned in her statement the acknowledged and unacknowledged thalidomide survivors. I would like to know a little more about the practical consequences that has for the survivors.

My other question is for LightAware. I have family members who have light sensitivity though it is not to LEDs but compact fluorescent lamp, CFL-type lights. It would be the same sensitivity, that is, an inability to operate within that environment. There was a battle at her workplace for a change of lights. It is really hard. You almost feel like you are being gaslit or not believed. I ask LightAware what are the best lights, on an international level? I do not use CFL lights in my home for my family member and my friend. It was touched on earlier but what can we do, as a committee, to ensure people are believed? What are the best steps to take? Are there any countries that have "shone brightly", for want of a better phrase, in looking after people with light sensitivity? How long did it take for Ms Dennehy's condition to be acknowledged? I can imagine many people said it was just her imagination. That this was a real issue for her was not believed for an awfully long time. The disability and condition she has must take an enormous toll on her as a person. I suppose that is a personal question. Ms Dennehy should feel free to be as candid as she wishes.

Chairman

Will we go to Ms Dennehy first and then return to the ITA representatives? Is that okay?

Ms Finola Cassidy

Yes.

Ms Elaine Dennehy

The problem started for me in 2007. It was easy enough to avoid in the beginning but there came a time when I was completely overwhelmed. That was probably about four to five years after that. My close family and the people in my network understood and believed me because they saw it escalate from the very beginning and so it did not seem that unbelievable to them. However, for somebody hearing it for the first time - it was maybe four or five years later before I started to tell people - it was considered unusual. I felt uncomfortable about whether I would be believed or whether I would be considered crazy and about how I was picking up on this form of light when others were operating perfectly fine underneath it.

The Senator mentioned CFLs. I am not good under those and do not have them in my home either but I am fine with them from a distance or for short periods of time. For me, there is a contrast between those two forms of light. Fluorescent lighting has been mainly in workplaces and we had a choice of what light source to use in our homes up until very recently. Whereas CFLs were being pushed in the 1990s they are now being phased out for health reasons as they are toxic in landfill. However, with LEDs we are now replacing one problematic light with another. LEDs are causing a whole host of other new symptoms people were not experiencing with CFL. I was sensitive to CFL, just mildly. The difference with LEDs is they are in every environment, unlike CFL. Now we cannot obtain the normal light sources like halogen or CFL for consumers who are okay with it. LEDs are in every appliance, including televisions, dishwashers, washing machines and microwaves and they are in power-on buttons and people's phones and watches. They are absolutely everywhere on the streets and in car lights and more public spaces are now lit with LED now. It is nearly a step-up from the CFL issue as we had more choices. People who are sensitive to LEDs have no choice now as LEDs are the main source of lighting across the globe.

Chairman

I thank Ms Dennehy and call Ms Cassidy.

Ms Finola Cassidy

I thank the Senator for her question. We would particularly like to raise the issue of what we call the "unacknowledged" thalidomide survivors. I will explain. The drug thalidomide was sold in Ireland, for example, in 1961. Thalidomide is the ingredient in the drug that causes the damage. Here it was sold under various trade names. There were about ten. One was packaged under the brand name Softenon. In 1961, 51,000 packages of that drug were sold here in that year alone. As I said, there were other forms of the drug in syrups, perhaps for a baby's soother to help with teething or for nerves. A man could take it. It was specifically the crossing of the placental barrier that caused the damage. To give more detail, the specific days of the pregnancy on which the drug was taken caused specific damage. For example, my mother probably took it on day 22 and day 23 and the arms were affected, as were my ears and there was the internal damage. It depended on what you took. That is why I was saying if somebody took it very regularly, they were one of those 90,000, sadly, who probably miscarried.

In the 1970s, when it was eventually agreed thalidomide was the cause of all these disabilities - and that was a long haul from birth to around 12 years of age - the State advertised and asked if children wanted to come forward. It brought some experts from Germany and they set up the Irish Thalidomide Medical Board. To this day, we are not sure how many people could have been affected in Ireland because there was a report undertaken, dictated by the Department of Health, around 1963 to look back at birth defects in Ireland. It was done by a lady called Dr. Victoria Coffey and never published, so we cannot be sure of the numbers. When we were 12 years of age people came forward. We know from Government records that more than 100 children came forward. These experts decided that 32 were recognised as thalidomide survivors. However, in the intervening years, there has been huge medical investigation into the drug thalidomide, especially because it has some good qualities. Members may have heard of its use in cancer treatment. Medical knowledge of the working of thalidomide has improved in leaps and bounds. We can now categorically say, and it is evidence-based, that there are other issues related to thalidomide that were just not picked up in the 1960s.

The medical board in the 1960s had the knowledge it knew then and disregarded many of the applicants because it was dealing in that knowledge at that time. We know that for a fact because our unacknowledged survivors have been examined by world experts and told categorically that they are thalidomide survivors. The committee could help us with something we need by explaining to the Government that there is new medical evidence and it would only be reasonable to allow those whom we call our members who are unacknowledged to come forward for a better and newer evaluation.

There are more records in Britain. Here, sadly, when we were 12 our parents had to show evidential proof to that committee that our mothers had taken thalidomide. I have sworn affidavits from the prescribing GP to my mother and the administration chemist down in Cork. All of this evidential proof had to be shown to the committee. How many people had the packet of a tablet 12 years after the event, especially when nobody was joining the dots to know that thalidomide was the cause of the damage at the time of the birth? That was not a fair criterion to have put on them.

I have spoken to a few people in the UK about how mothers felt enormous guilt about taking this drug. In some cases, they never admitted that they took it. We know of cases where, on their deathbed, mothers broke down and apologised. It was the first the survivors knew of their disability being caused by thalidomide. For all of those reasons, it is only timely, 60 years later, to correct all those errors and allow these unacknowledged survivors to have a fair assessment using modern medical knowledge.

The State, through Dáil questions and answers, regularly says it is open for all unacknowledged survivors to go to Germany to be assessed and the State will automatically accept those assessments. However, I must stress an important point because we cannot seem to get it across to the Department of Health. We now know that the criteria the Germans use in their assessments of thalidomide survivors are still very much based in that time of the 1960s criteria. Those criteria have not moved with the times and do not embrace the more modern knowledge. It is very important that we stress that the Department of Health cannot continue to suggest unacknowledged survivors go to the special Contergan Foundation in Germany for assessment. We know it is flawed and it would only add insult to injury if the Department kept stressing that this was the mechanism open to the unacknowledged. I hope that gives the Deputy some idea of the answer.

Chairman

I thank Ms Cassidy for her evidence.

Deputy Holly Cairns

I thank all of the witnesses for taking the time to appear before the committee. Their insights are invaluable in helping us understand the lived reality of disability and discrimination. Unfortunately, we know disabled people are more likely to experience discrimination and for it to occur to them more frequently and it is more likely for it to have a serious impact on their lives. Most worryingly, it is a reality that people with disabilities mostly encounter discrimination in our health services.

My questions are for the Irish Thalidomide Association. There are no words for everything its members have endured throughout their lives, especially the discrimination they have all faced at the hands of the State. At all stages, all they have asked for is justice. Their statements today were a list of how the State and successive Governments have failed them with references to the UNCRPD. In their opening statements, the witnesses discussed the failure to provide for equality under the law and referenced Article 5.1 that "all persons are equal" and how that has failed them. It seems to be fundamental to the disgraceful treatment. Would the witnesses mind elaborating on how they and other survivors have been failed by this principle and the impact it has had on their lives?

I hope that some good can come out of this meeting. We have people come before committees all the time and, ultimately, something has to come from them taking the time to appear before us.

Would the witnesses mind outlining the supports they receive at present and the gaps and unmet needs there? What changes are needed in the services to appropriately meet their needs? That would give us an insight. The witnesses referenced the principles of the UNCRPD. We often discuss in this committee the need to ratify the optional protocol to the convention. We have heard from the Irish Human Rights and Equality Commission and the UN special rapporteur on disability that we could ratify tomorrow.

When we have these public hearings, it is important for us to know what difference that would make to the witnesses' lived experience, when we hear about everything that is going on and how outrageous it is. If the UNCRPD was ratified and the State was obliged to meet their needs, how much of an impact would that have and what unmet needs would be met?

Chairman

Who wants to take that?

Ms Jacqui Browne

I will do my very best to address Deputy Cairn's questions. I thank her for her insightful questions that show a depth of understanding and respect for the position in the Irish Thalidomide Association, which is most helpful. The Deputy hit the nail on the head regarding the optional protocol. What that would do for all disabled people, including Irish thalidomide survivors, is allow any individual to follow up and take a case or an issue to the UN, but only in the event the individual had exhausted all options in the State first. One still has to go through all the mechanisms for seeking a resolution. The optional protocol would be hugely helpful.

It would also allow for people to come together, although there is no such thing as class actions under the Irish legal framework. The Deputy knows that better than I do. At the same time, it would allow people to coalesce and work together. We were promised originally that once the first State draft report to the UN convention was issued and presented to the UN, the optional protocol would be signed. That was issued last year by the Minister of State, Deputy Rabbitte, and we are still waiting. It has not happened yet. It is hoped that will happen soon. We are waiting on the Minister to sign the optional protocol. That is a game changer for all disabled people, including Irish thalidomide survivors, but people must appreciate one has to start locally before one can avail of it.

To come back to the gaps in the list, it would be great if we could give the committee the rest of the list with the services we need. Ms Cassidy highlighted several times in her presentation and answers that our needs our unique. One cannot come up with a shopping list that applies across the board to all 40 of us, but the number is small. This is why we emphasise the issue of non-discrimination. While our needs our unique, the solutions can be found and provided within this country. However, it is not a one size fits all. That is for sure. Different people have different impairments and restrictions in day-to-day life.

Some of them are very easily dealt with but we need people to sit down and talk to us, meet us and respect our lived experience of 60 years. We know the way we have lived for the past 60 years and what the issues are, where and how we get pain and what causes more pain for us, such as not having a piece of equipment, a motorised chair or the right adaptations in our houses. However, there is no one-size-fits-all solution.

To come back to where the Deputy started on equality before the law in Article 5.1, it is still the case in this country, and rightly so, that any settlement made in favour of a minor has to be adjudicated upon by the High Court. An arrangement was issued before the High Court but the problem was that it was never ruled upon. The "settlement" that was offered and given to our parents, albeit small lump sums of money, was never ruled upon by the High Court. That is one of our big issues.

We cannot speak any more to that issue today but those are the historical facts. We, as adults now at the age of 60, do not believe we have yet experienced equality before the law. They would be the main factors I would like to bring to the committee's attention. I would point to inequity, including geographic inequity, and lack of access. Ms Cassidy rightly stated that there are other experts in the world to whom we need to have access, as appropriate, for both the acknowledged and unacknowledged thalidomide survivors.

Ms Finola Cassidy

Could I add a further comment in response to Deputy Cairn's question if that would be appropriate?

Chairman

Absolutely.

Ms Finola Cassidy

Ms Browne covered the overall issues but I would point to a specific one. Members of the committee would all be aware of the requirements to qualify for primary medical certificate to qualify as a disabled driver. The wording of the primary medical certificate is specific. To qualify for the certificate the applicant must not have the whole use of one hand, arm or leg. As a result of the variety of disability in the arms of our members, ridiculously, we cannot say their whole arm is missing, but given how catastrophically disabled their arms are, it would be ludicrous such an applicant would fail to qualify for the primary medical certificate to enable them qualify as a disabled driver. The simple provision of small adaptions or being able to purchase an automatic car, which our members could drive with their arms, is such a basic simple need. When I used to drive a manual car, my good arm had to cross over the my body to lift the parking brake, etc. It was a game changer to qualify to become a disabled driver. I have helped other members complete an application to qualify for the primary medical certificate and it is a simple process, but their applications have been refused because, technically, they have two arms and account is not taken of how disabled those arms are. The simple provision of that certificate would be a game changer for this small group of people.

The county councils award grants for house adaptions. Due to the lack of funding in county councils throughout the country, we have almost no evidence of any thalidomide survivor qualifying for some of those grants. In fairness to the Department of Health, there are attempts to help with certain provisions. Some of us have got a few items. However, there are ludicrous situations, for example, where somebody with virtually no arms or with little fingers from their shoulders are getting some house adaptions to use motorised aids similar to a television remote control which they could use with their teeth and some of their fingers, for example, to open and close curtains or blinds. We have a case where the blind was approved but the material in the blind was not. The silliness of the minutiae of the daily living in the applications to be made and the fights and struggles become really tiresome when our members are physically not well and in pain. Sometimes for our members it is easier just not to ask because the fear of refusal and being declined is wearying and we have experienced it for years. As Ms Browne said, if we were listened to, we have very simple solutions to many of our needs. They would be able to be taken off the list so simply.

Chairman

The issue of the primary medical certificate is a body of work we need to do. It is a glaring issue that needs to be addressed. Do any of the other witnesses wish to come in?

Ms Elaine Dennehy

I wish to respond to a question Senator McGreehan asked about the best sources of lighting. They would be the old incandescent bulbs and for our streets generally it would be the sunbeam street lights we have had for decades. They are considered the most healthy light sources. I will pass over to my colleague, Ms Levin, who will comment further on this as she would have more expertise in that area than I would have.

Ms Anna Levin

Incandescent lighting was banned and phased out by the EU with no provision for people who cannot tolerate the alternatives, no provision for people to light their homes or live their lives. LightAware, which is a small charity, campaigned very hard to get an exemption included in EU law in order that people who cannot tolerate the current forms of lighting can at least access incandescent or halogen bulbs to light their homes.

It is not a mechanism whereby a person suffering from this sensitivity would to be able to work or go out but it is an acknowledgement that people need to be able to light their own spaces.

We were asked what are the best types of light? Sadly, they are not widely available. One action the committee could take would be to examine the exemption in EU law for people who need alternative forms of light to enable them to access those and see how that could work in practice. For Ms Dennehy and many other people we hear from, whether they go to their doctor or pharmacy, while it is all very well having this written in the law, how do they get a light bulb to light their homes? The committee could take on that challenge.

Chairman

We will certainly do that.

Deputy Seán Canney

I have been listening intently to what has been said. I especially welcome Ms Dennehy to the meeting. She is a very brave person whom I met probably ten years ago. She worked in a jewellers in Tuam at one stage, which is where my wife and I first met her.

I have had conversations with Ms Levin from LightAware in recent years. I will speak to this issue first. Ms Dennehy articulated what her life is like. From my perspective, as a local person, I know the terrain of the environment in which she lives. I have been in her house. I know where she was living in Tuam from where she had to move. They are all very nice places to live. For Elaine, there seem to very few places where she can live and have a life. The sensitivity issue Ms Dennehy suffers from is so severe that when the council was carrying out roadworks and put up temporary lights, it closed off an access avenue for her while that work was taking place. The difficulty with the local authorities is that they will say these are the lights that are now available. There is some old stock of lights available but there is a great lack of awareness of the actual issue.

This issue has been discussed in Europe and elsewhere. There seems to be a drive to install energy-efficient lights everywhere, but that policy may be leaving a trail of destruction in its wake. It is an issue for the specifiers of public lighting, temporary lights and driver feedback display signs. Ms Dennehy had to deal with forecourt lighting, which was being left on all day, a few weeks ago, which meant she could not go into a shop to buy groceries or put petrol in her car. For those who cannot tolerate this lighting, it comes down to very simple things that we take for granted.

There is a large of body of work to be done by legislators to make people aware of this issue. This discussion today is only a step in that direction. I thank the committee for inviting Ms Dennehy and Ms Levin to participate in this session. We need to continue to highlight this issue to bring about change where it needs to be made. The Departments of Transport and the Environment, Climate and Communications, as well as the local authorities, need to be made aware of what is wrong in this respect. In addition, with respect to the lights Ms Dennehy mentioned, we should return to the old-fashioned lights we had for years, which gave light and were effective. We must examine the issue in the context of the impact it will have on people's health if we do not address it. That will be a major task. It may have to be addressed in Europe again but until it is tackled nationally, the local authorities will have to follow whatever policies are in place.

I do not have any questions for Ms Dennehy because I know exactly what the situation is. I cannot imagine the entire situation but she has articulated it to me so often that I do not need to ask any questions. LightAware is an advocacy group based in the UK and maybe we need to encourage it to form a branch in Ireland or take on the Irish situation and try to get it on to the national agenda. No matter how Ms Dennehy describes it, it still does not give the full picture of what she is living through, has lived through and continues to live through. Today is just about telling legislators about it, so well done to her on that.

Ms Cassidy and Ms Browne also spoke about thalidomide and the issues they have. I understand that the housing adaptation grants funded by the local authorities do not cover the cost fully and are also means tested. Someone working and with an income of over €40,000 cannot get any support. It goes back to the UN Convention on Human Rights and the protocols that need to be brought in. Having a person-centred approach to support is the key. Both Ms Cassidy and Ms Browne made that point and I wrote it down. We have been raising the issue of transport support schemes, their demise and the cancellation of some schemes since 2011. Now we find that the primary medical certificate scheme is in disarray as the appeals board has resigned because the scheme was not fit for purpose. We have been doing work on that. We as a committee are putting pressure on but we also need to continue to meet people like the witnesses, who can articulate exactly what they are experiencing in such a comprehensive way. I compliment them on that.

My questions have already been asked so I will not ask the witnesses to answer any questions. I just want to say to them that I and all the members are on this committee because we want to be on it. We were not nominated by anybody. We want to be on it. That is our strongest motivation. I would also say to Ms Dennehy not to lose hope. Sometimes we find that we cannot make progress, and it is going to be a struggle to make progress, but this committee has a better understanding following her presentation and Ms Levin's contribution today. I thank them for that. I do not have any questions as such, unless someone wants to make a comment.

Ms Jacqui Browne

I thank the Deputy. He has reflected very well the support we feel we are getting from members of this committee. That is hugely appreciated by the members of the Irish Thalidomide Association. I assure him that his kind words of support are appreciated by all of us. I agree with everything he has said. All the questions that have come from members of the committee have illustrated very clearly that there are significant gaps in the intersections between Departments that must be addressed. We are so siloed in this country. Everything is siloed into different Departments and never the twain shall meet. That is a big issue and we are the ones who lose out around the pots of money.

The core concern for thalidomide survivors is in the area of transport. The Deputy has already highlighted some of the issues there.

Housing is another issue, as is health. The means testing is disingenuous. It flies in the face of what we were promised in 1975 by the then Minister for Health, Brendan Corish. He said that all our needs would be met irrespective of means. Some of the meagre allowances we get are tax-free under the Finance Acts. Logically, if that income is tax-free then why do we have to go through means testing at another level? There is a total conflict there that needs to be resolved. Thalidomide survivors are a very small and unique group. There will not be more of us. It happened during a very specific period of time, three or four years in Ireland, so it is not like there are 2,000 or 5,000 people behind us waiting to come in the door. For the sake of 40 people I strongly ask the committee to consider calling for the removal of means testing for thalidomide-specific grants, be those related to housing, health or transport. That would be huge.

I will make an observation, in order to emphasise that are need are unique. This is based on my personal experience, although I do not often talk about personal experiences in public forums because my personal life is my personal life. I had a massive fight over ten years ago, which boiled down to trying to gain access to something that is generally available to the population at large, namely, the treatment abroad scheme. I have had several surgeries over my lifetime but this time I needed extremely complex orthopaedic surgery as I had been carrying a number of fractures for a number of months. I ended up visiting more than 13 different surgeons in this country. Every single one of them agreed what needed to be done but none of them would touch me because they did not have the expertise and the surgery would be beyond them. They said I needed to go abroad. I went to Germany and found a team there that would resolve the issue and offered to do this surgery - or surgeries, as it turned out. I came back to Ireland and applied for the treatment abroad scheme but I was refused. I was turned down. I ended up paying for that myself privately out of my own pocket. Being the dog with a bone that I am, I pursued it after I came back, while I was also quite ill. There is the trauma of dealing with your own health and the trauma of dealing with the State and trying to justify what you believe is your right to the treatment abroad scheme. That scheme is open to any member of the public, not just thalidomide survivors. It eventually got settled but it went all the way to the High Court. However, it did not end up in court because as usual, after both the State and I having spent an awful lot of money, it settled. I just wanted to share that simple example. Why do we still have to keep fighting and fighting? It is exhausting.

Chairman

Would Ms Dennehy like to make a comment?

Ms Elaine Dennehy

Ms Levin can take this if she wants.

Ms Anna Levin

I know the Deputy did not ask specific questions but I would just like to thank him on behalf of LightAware. We spoke about Ms Dennehy's case but it is not just her. There are many people in Ireland and all over the world dealing with this issue and it is important that we broaden this. Ms Dennehy has been very brave in coming here and speaking today. There are big accessibility issues with coming here. I have just received an email from someone dealing with the European Parliament and it has acknowledged this issue and spoke about lessons learned. It is also very important from the disability and accessibility angle to realise that not everybody can do screens. In this current Covid environment, people are even more disabled by not being ale to participate on Zoom and Teams. Ms Dennehy has a friend helping her today but someone who did not have a friend to help could not do that.

It is an accessibility issue for the committee to be aware of in that this LED technology is also our means of communication and that is what people are cut off from. I am grateful for this opportunity to share these stories and to Deputy Canney for acknowledging what has been going on.

Ms Elaine Dennehy

I would like to thank Deputy Canney. I have been in contact with him for many years. He has been a source of support and has helped me have my voice heard. I also thank LightAware, of course, for all the support it has given me in the past few years and even for the acknowledgement that there are many other people around the world just like me. I guess I do not feel as crazy. From the start, I wondered if it was just me and why everybody else was okay with this technology. I am thankful to all the members of LightAware and to Deputy Canney for the opportunity to be heard today.

Chairman

We will now go to our Vice Chair, Deputy Tully.

Deputy Pauline Tully

I welcome the witnesses. I apologise that I had to leave the meeting to take oral questions with Ministers in the Dáil. I was here for some of the witnesses' statements and I read them prior to the meeting. I apologise if I repeat what others have said or if I ask the same questions. If I ask a question that has already been answered, the witnesses do not have to answer it again. I can watch the recording of the meeting.

I thank Ms Dennehy for sharing her personal experiences with LED lighting. It is an issue that the majority of people are not aware of. I discussed it with my party spokesperson on climate action. He was not aware of this issue. He had thought, as many of us do, that LED lighting was the way to go and that it was a climate-friendly action to replace lights with LED lighting. I suggest that we share this information, on the effect of LED lighting, with the Committee on Environment and Climate Action. It was said that it has an effect on wildlife and the ecosystem. It is important that we also share information on that. If there are any reports on that, I ask that the witnesses send them to us and we will share them with the committee. There is not sufficient knowledge on this issue. I am not sure how many are affected or how prevalent it is but it does not matter if it is a small or a large number. It needs to be taken into account when we look at our LED lighting system. Has it been considered by the National Disability Authority, NDA, universal design team? When it draws up universal designs, is it aware of LED lighting and is it factored in to what it is doing?

I thank Ms Cassidy and Ms Browne for sharing their stories. It is heartbreaking to hear that they still have to fight for supports. It is the same story we hear from every family where there is a disabled person. Individuals or families with a disabled child are still fighting for supports. There should be a system whereby everybody is told what they are entitled to. They should not have to look for it. They should not have to fight for it. If people are entitled to something, they should know they are entitled to it and be able to access it. I refer to the issue of being promised something. It was indicated that Brendan Corish - we are going way back - promised supports and they were never implemented and people are still fighting. It is dreadful.

Do the witnesses find that medical professionals are more knowledgeable of thalidomide? Obviously, they work with a number of medical personnel, but are all medical personnel aware of this? It was said that it is a small number and it, therefore, should not be difficult to ensure those who need to know, know. It was described how difficult it is to give blood. That is something very basic and it should be understood.

I have a couple of comments and questions. I understand if the witnesses have already covered them. They do not need to come back to me.

Chairman

I will call Ms Cassidy first and then we will go to Ms Dennehy or Ms Levin.

Ms Finola Cassidy

Ms Browne certainly has more personal experience. As she said, we do not like to have to tell our personal stories but that is the problem when you are one of so few people in the country, nearly everybody knows the individual in their parish who is a thalidomide survivor and then they end up explaining

I refer to the medical care, I know Ms Browne might have an addition to this. When we talk about Brendan Corish in the 1970s, there was an idea at that stage that we were the survivors of this catastrophic event and we were not expected to live much past our 20s or 30s. There was no plan. Many of our parents were told that their children would not survive that long and that they should make the most of the life they had etc. To our credit, when we reached our 20s, many survivors led phenomenally independent lives as disabled people. I spent virtually my whole life pretending I was not disabled. We tried very hard to do normal things our normal way. In fairness to us, we go on with that. It was the onset of middle age that brought us back together, as well as the crop of unprecedented reactions in our bodies. Our bodies began to cave in.

The Department had not heard from us in 35 years. We were a bit of a surprise when we came back out of the woodwork because very little had needed to be done in the interim years because of the independence of the disabled persons in our little group. The Department needs to realise that aside from the thalidomide issue, it is the overuse and misuse of those disabled limbs, doing things that the bodies with disabilities were never expected to do, that has taken this later toll on our bodies.

Deputy Tully asked about the medical professionals. The problem is that some of us are actually quite healthy. We are in a lot of pain but we are not ill. When we go to see a doctor, it is usually because of acute pain and bone-related issues. If we have to apply to the local area care unit or the HSE, there are waiting lists for physiotherapy and everything for years. When we have made that strain, the pain is exacerbated there and then multiplied hundreds of times, and we need to access services immediately. It is safe to say that among our group many of us have, maybe locally, worked with our own physiotherapists that we have been paying our own money to because they take the time to understand and assess our needs, as private clients, and work with us continually. If we go to the HSE and ask for physiotherapy, I know in my area there was a two-year waiting list. That will not work for anybody on any level. A person attending will not get the same person consistently. It will be a twenty-minute slot whereas we have invested personal time and personal money in many cases to find the experts in our area who can relieve our pain and manage our condition.

I remember a story of one of the more disabled people in a wheelchair who had dislocated a shoulder. The person presented to accident and emergency but the orthopaedic surgeon on duty that night wanted to relocate the shoulder in a normal way. The surgeon got the bright idea that if they X-rayed both shoulders, they would copy whatever was on the other so that they would match. They could not understand that both shoulders had unique bone deformities and were completely different. The bones could not be corrected in that way. Many of us have experienced that.

We need a scheme where we are in charge of our own destiny. We have invested the best resources of ourselves in finding the solutions. The fragmented HSE system is not working and sadly is not a fit for us. The Government and the Department, as well as Members of the Oireachtas, need to understand that. Our solution is more cost effective because it is direct. It does not need a lot of paper work or bureaucracy. As Ms Browne said, we know what will fix us and when it will fix us. That is where we need that support. Has Ms Browne something to add?

Ms Jacqui Browne

We are all 60 years of age, give or take. There might be at most a straddle of three years. We will not be around an awful lot longer. The exposure for the State, in terms of costs, is not much in the big scheme of things. Where is the justice in terms of affording us some dignity and quality with the rest of our lives, considering, particularly in the past ten years, as Ms Cassidy highlighted, the ever and rapid decreasing physical capacity among many of our survivors? We may not be physically ill, but our physical abilities and physical strength, for example, is rapidly declining.

We need a lot more support, including, by the way, which we had not mentioned her - and it was remiss of me to forget to mention it - personal assistant, PA, supports. I know the committee will be well aware, because I am involved in another space, and, indeed, I have been at committee meetings here previously, of the area of personal assistance scheme. That needs to be legislated for. There is a good campaign, that the committee will be well aware of, working with the Independent Living Movement Ireland. If that is brought in, that would also be very much available to us as thalidomide survivors.

There are things that, like that, are creative, unique and flexible, for instance, a system such as a personal assistance scheme. Indeed, there was reference to Ms Elaine Dennehy having support here today to be at this meeting. A personal assistant would and should be equally available to somebody such as Ms Dennehy.

There are things that are universal solutions for all of us that we would love to see the committee pushing for on a legislative basis. They would be the main points. We must be allowed the choice. The UN convention clearly identifies choice, control and independence, especially, for us, when it comes to matters such as health assessing.

To address Deputy Tully's final question around the medical profession, the problem with the medical profession is they change. They go through GP training schemes and hospital training schemes. They are ever-changing these teams of doctors as they go through their training practices after basic medical training. You might have just educated a group of people in a hospital setting but you could be back six months later and have a whole other new group of people looking at you as if you had ten heads. I am very fortunate. Personally, I have a wonderful GP. Every year, because he is involved in the GP training scheme, he contacts me and asks me to come over and I do an education class with some of his trainees on site. I am involved in a way with the GP training scheme. Indeed, I have been invited to do more work with them in due course. In any event, there is awareness there but, because the numbers are so small and we are dotted right around the country, it would not be practical or possible for every medical professional to know everything about thalidomide because it is not that simple. Part of the training of any medical professional is about communication skills. Once they have the communication skills and once they have the capacity and the willingness to stop, listen and hear what we have to say, then we are on the right road.

Ms Elaine Dennehy

I can answer the question on ecology and environment. There is a whole body of research and reports that I can forward to the committee as requested. That would be no problem. For example, a recent study found it expected to observe a drop in illuminated areas captured by the satellite. Among those countries observed, 20 of them had an increase of 150% or more of their light at night since the introduction of LED street lighting and outdoor LED. Another 60 countries saw increases between 110% and 150%. That research is important because it proves that light pollution continues to grow despite the transition to LED.

It is also a case of what you measure. Some people can claim to be economical due to the measurement of watts per lumen in the light fitting, but if you look at the total environmental impact, the resources used, the difficulties in recycling it and all of the disposal issues, and anything leaking into landfill such as copper and nickle, LED is not what you think it is.

We are just measuring watts per lumen. There are many other studies that I have in front of me as well and I can send that all on to the committee. This impact on wildlife, insects and nature is growing. We all need darkness at night, including animals, plants and trees.

Ms Levin may be able to answer on the design part of the question.

Ms Anna Levin

I thank Ms Dennehy. To add to that, there is an irony that this transition to LED lighting was purported to be on environmental grounds but it has caused an environmental problem throughout the world because the perception of it being cheap and energy efficient means we have much more lighting. Light is time in the natural world. Every creature on earth is light sensitive. It is not just Ms Dennehy but every tree, flower and bird. When we have too much light, it messes with those systems and cues. Ironically, the most energy-efficient form of LED lighting that we have in many of the street lights is very blue and bright and is the most environmentally damaging. There is something that needs to be addressed here.

There was a question contained in the question about how many people are affected as well. One of the previous members answered that to some extent by talking about the sliding scale. There are people, such as Ms Dennehy, who are very severely sensitive to light and who we describe as light disabled. They are unable to continue to live a normal life. There are people lower down the scale who get headaches, have sleeping problems or skin disorders or may exhibit anxiety. It affects them in different ways but they are pretty much able to function. Then there are people who do not even know or think they are affected but those blue lights that are upsetting the natural world are also changing human sleep patterns and circadian rhythms.

Circadian rhythm governs not only waking and sleeping but every physiological process in the body from the salve neural to blood sugar. Therefore, light needs to be taken much more seriously. The Irish Thalidomide Association is talking about how things are seen in very separate departments and this is one of the problems that has happened with light. Maybe it is seen as a product, like a kettle or a fridge, and we are regulating on those grounds, but it should be treated with the respect and care shown when we develop medicines because it affects every cell in the body. There is a big issue here of taking light more seriously. We cannot say how many are affected unless we qualify what we mean by affected. There is a significant body of people who are adversely affected and it is impacting on their quality of life. It is a big question of their human rights.

Could the design question be repeated? I was not sure which member asked it.

Deputy Pauline Tully

When we talk about universal design, be it for houses or in the environment, is that taken into account? I assume from what Ms Levin is saying that is not the case.

Ms Anna Levin

No. It is something that needs to be taken into the design stage. The drive for energy-efficient products was about working with the designers to make sure things are designed but it comes back to the same issue that they were looking at one measurement, which is watts per lumen. Even that is contested. When we look only at energy efficiency, we are not looking at the environmental impact, the materials, recycling, the disposal issues or the wider impacts on ecosystems. It was a well-intended process that has to some extent gone wrong.

Senator Fiona O'Loughlin

I thank the witnesses for their important engagement. I have certainly learned a great deal, in particular from Ms Dennehy and Ms Levin, because I would not really have been aware of the issues they have spoken about regarding direct exposure to LED.

LED is everywhere and will increasingly come onstream so I can only begin to imagine its impact in terms of trying to carry out the functions of daily life. Ms Dennehy has said that she had to move home and that is really a difficult situation to be in. I imagine that local authorities have a big role to play, particularly in terms of street lighting, etc.

Deputy Tully made a point about universal design. This committee has had presentations here and we, as a committee, have been very strong advocates for the introduction of universal design to meet the challenges and issues concerning people who have types of disability. Sensory disability is a different type of disability that has come within our scope. I believe that sensory disability needs to be incorporated and I ask the witnesses to comment on that.

I am aware of issues that had an impact on the lives of people with thalidomide, and of course I am aware of the history and background. A number of years ago I met a young man, who is the same age as me, with thalidomide and I worked with him to address some of his challenges and issues. At that time I was quite shocked to learn that there were not more State supports available. I was absolutely shocked that people with thalidomide did not have automatic access to a medical card and had to fight for it every two years. This particular gentleman sought free travel as he lived 60 miles outside of Dublin city and needed free trade to access medical appointments, etc. We fought his case on a number of levels but did not get anywhere so I totally understand the needs and challenges.

The unmet costs of living with thalidomide are quite high. Perhaps the association could comment on that. Please also outline the appropriate care interventions that are needed and the existing gaps. These matters may have been covered when I stepped out of this meeting to attend to another duty and I am interested in hearing all responses.

Ms Elaine Dennehy

On efficiency, MIT discovered in 2017 a way to make the old incandescent light bulb more efficient than LED by recycling the heat that is lost in the filament and bringing it back into the bulb to use that energy. So straightaway we have a health light source that could be used easily in homes and workplaces. It would be more difficult to get it into springs and homes but it could be used to supply street lighting. So we can do something, it just has not been examined yet. I have nothing else to add.

Ms Anna Levin

It tends to be forgotten in the discussion on energy efficiency and climate that the contribution of lighting to climate change depends on how the electricity is made and how much light one uses just as much as the technology one uses. Some people think that energy efficient technology means we can put lights everywhere but we may achieve greater savings if we make sure that the energy used comes from a renewable source and that we used less light. Therefore, we must guard against focusing too much on one measurement.

Ms Finola Cassidy

Senator O'Loughlin asked a question about unmet costs. I had a hip replacement so I had to access physiotherapy twice a week and this was during a time of Covid, which did not help. The only thing to do is to have the person who knows your body to help one recover and come to one's home. As this was during Covid, a home session cost €75. The Government, every time it replies to a Dáil question, loves to state how much thalidomide survivors receive. The bottom line is that we get €16 a day or if one has no arms and no legs the sum is €37 a day. What happens when one requires physiotherapy that costs €150 every week, which is a basic cost, and must pay for all of the other costs? That is the finer detail.

I am the spokesperson for the group and I know our members very well at this stage. We are very proud of our friendships because we are so unique. We can feed off each other in terms of what works and what does not work. In fact, we have a very big connection with international thalidomide survivors. What I find with the geographical spread, which we mentioned, is that some of our people are very out on the margin and do not think that it is an automatic and basic need to get preventative physiotherapy and preventative treatment to help maintain the level that they have now deteriorated to. People are not inclined to spend their money on that because they find it hard to accumulate money.

I will refer to another matter. The Irish State, in its dealings with us, mentions in Dáil answers, which are in the public domain and I am not saying anything that I should not, the money we get from Germany because we have a separate thing going on there. More recently, in 2013, the German Government did not feel the need or took a very narrow view of the survivors who live outside of Germany and the Irish beneficiaries of the German foundation. They brought in a law and said that if people get a payment from another jurisdiction or source, then they deduct the equal amount from our pension. We have had to take a separate issue to the German courts and that fight is ongoing. At the moment, and for many it is at least eight years, the German Government, under the auspices of the foundation, insists that we need to send a letter from the Department of Health to say that we get €16 or €37 a day and then the Germans deduct that amount from our payment. They view this money as a double payment - one from German and one from Ireland - but in fact it is not, which is why we have brought a case all the way to the supreme court in Germany because in Germany the supports are far better. The physio needs and alternative medicine needs are almost mandatory for thalidomide survivors, plus people can access them with very little bureaucracy. We found a complete difference here Ireland. We have had to fight that as well as conduct our ongoing campaign.

Ms Jacqui Browne

To add to what Ms Cassidy said and to specifically respond to the Senator's question on care and intervention, it is not for me or for Ms Cassidy to identify and tell the committee the care and intervention needs of thalidomide survivors but I will highlight a medical fact. We are very fortunate in the thalidomide community and internationally that we have a couple of very interested epidemiologists who have spent their entire professional lives researching, among other issues, the epidemiology of thalidomide survivors worldwide. One interesting medical fact, and we know it because we are living it, is that while we are all roughly 60 years of age, our bodies are like those of people who are 80 or 85 years. Therefore, one must factor that aspect into our ongoing future needs, be they physiotherapy, occupational therapy, equipment, new cars or whatever. It is impossible to give a nice list of the care and intervention needs.

This goes back to us being unique. Each one of the 40 people is unique. Some have very high-level needs. One member and survivor needs a very high level of care and support while there are others who might appear to have fewer care and intervention needs. It concerns very practical matters. I cannot do a weekly shop on my own because I cannot lift stuff. I live on my own so I need support to do that. I could pay €8 for home delivery and might not get what I want because I have to pick it off a menu on a computer. That does not represent choice, freedom and control. They are the practical simple examples. It would be wrong of us to prescribe, suggest and give the committee a list of our care and intervention needs today. We wish to highlight our need to have choice and control over our lives and the need for the State to show flexibility in its response to meeting us where we have identified our unique needs.

Senator Eileen Flynn

I am attending on behalf of Senator Alice-Mary Higgins. I thank the witnesses for appearing before us. Listening to Ms Dennehy really opened my eyes to the little things we take for granted on a daily basis. I heard the figure of 40 people. For me, that is 40 people too many living in inequality due to disability needs. I would not use the word "easier" but the State could put something in place to make 40 people's lives much easier.

Ms Browne spoke about reports and laws from 1975. I am 32 years of age. I am even trying to think about 1975. We need to update our policies and review them in this committee. I live in rural Ireland and know how difficult life can be there. Funnily enough, I was born and reared in Dublin where there are hospitals all over the place. Trying to get to a hospital that is 50 minutes away from where one lives is very difficult for people who can drive or get lifts from friends. It is very difficult to get buses in rural Ireland. Ms Browne spoke about being listened to. People want to be listened to. It is grand that we as politicians and legislators listen but it is not just about listening. It is about listening but the recommendations the witnesses give us today are extremely important for going forward. We may be talking about 40 people but this is an awful lot of people who have this issue and they need to be listened to. I do a lot of work with independent living. It should be included in independent living programmes and care assistants who support people on a daily basis because there are no better people to speak than the people who are living through it. I thank Ms Dennehy so much for being honest and open with the committee.

I do not have many questions. One question is really important but I am sure it has already been answered. Do the witnesses think there is enough protection under Irish law for people like them? I have heard them speak about accommodation and transport and, obviously, the witnesses do not feel protected. It would be nice to hear from people about what this committee could do to make life easier. I again thank the witnesses for coming before us today and educating me about the effects of LED light because I did not have a clue about it.

Ms Elaine Dennehy

I do not think there is any legislation in Ireland that would protect me because my sensitivity is only becoming acknowledged. I am not sensitive to the sun and I do not need sunglasses on the brightest of days but LED technology is so new that there is no legislation for something as specific as that. At the end of the day, I suffer from migraine and new daily persistent headache, NDPH, which are considered disabilities. There are people with disabilities who are covered under Irish legislation but there is nothing specific for LED or artificial light sensitivity.

Ms Jacqui Browne

I very much welcome Senator Flynn's contribution and understanding despite the fact that she is only 30-odd years of age. Fair dues to her. We respect that immensely - no better woman than Senator Flynn, who has years of fighting on behalf of the Traveller community behind her. We have an awful lot in common. One of our thalidomide survivors comes from a Traveller background so that is very important and I know it is very close to the Senator's heart.

We have answered some of the Senator's questions about how we resolve the issues around access to transport and hospitalisation. I also live in rural Ireland. I live in County Kerry in the south west, which is the guts of 200 miles from Dublin. Most of my medical interventions had to happen in Dublin. Some happened abroad. I spent my childhood in a special setting in Dublin. I spent two and a half years in a school for the deaf so my family and I know all about being isolated from your family in a residential setting.

There is a lot of history that we can share but the Irish Thalidomide Association is much more focused on the here and now and the future. We all own our history so we can do what we wish with it but I am much more focused on us living the rest of our lives as best we can with dignity, independence and respect for our rights and being able to enjoy those rights. Under Article 5, it is not just about securing our rights. We are meant to be able to enjoy rights. That is the core principle behind non-discrimination legislation. This is very specific - having the right to enjoy your life. We are getting too old to be fighting all the time. The committee's support is hugely appreciated. We keep saying "please go fight the good fight and represent us". We did it for Covid. We removed walls of bureaucracy. We removed barriers left, right and centre to address Covid. Why can we not do the same for people experiencing discrimination, trauma and an ongoing uphill struggle? It is very simple.

Ms Anna Levin

Ms Dennehy said that any legal protection under disability law would need to encompass migraine because light sensitivity is not yet recognised. I draw attention to the social model of disability and how people can be disabled by their environment. There are people who are disabled by specific forms of lighting. Somebody mentioned CFLs earlier.

That is also problematic for many people who have no other physical issue or no precondition, but who have been disabled by the environment around them. That is something that needs to be taken seriously. It has been acknowledged in German law now. Precedents are coming.

I wanted to put the question to the committee. We were asked if we feel there is enough protection under Irish law. LightAware is a small charity run by volunteers. Most people are light sensitive and struggling with computers themselves. It is a question we have been trying to ask and find answers to for five years, whether there is any protection under Irish law for somebody who cannot work, cannot live without extreme pain and suffering, cannot travel, cannot access medical care, and really cannot function and do the basic things. I was moved when Ms Dennehy said she was unable to go to the park, to church or to visit her parents' grave. I am no expert in the law of any country but I would like to put that as a question. Is there any provision for the human rights of somebody who is disabled and tortured by lighting?

Deputy Jennifer Murnane O'Connor

I was at another meeting and coming and going. I met our guests a while ago. I am not sure if I missed some of the questions or if I am repeating some of them. Can they discuss what supports survivors of thalidomide receive and the gaps in the unmet need? Where does Ms Browne feel there are big gaps? Ms Browne might have discussed this. What changes are needed in the disability service to appropriately meet survivors' needs? Does Ms Browne feel this is recognised as a disability or what does she feel about that?

I have one other question in regards to the migrants and the integration policies and how policies need to be strengthened to allow individuals live in communities. Is there a lack of funding? Is there a lack of supports working through local authorities or other groups? If these questions have not been asked, maybe the witnesses could come back to me with answers to them. I thank our guests and apologise for being in and out of the meeting.

Chairman

We might put that to the migrant group at a later stage because they are not attending.

Deputy Jennifer Murnane O'Connor

Apologies, I did not know if they had come in because I have been coming and going.

Chairman

No problem at all. I fully understand. Many members are coming and going to meetings-----

Deputy Jennifer Murnane O'Connor

Yes, we are speaking.

Chairman

-----on a Thursday between the Seanad and the Dáil but, at the same time, everybody is giving the time to these issues. Maybe someone would reflect on Deputy Murnane O'Connor's question on the unmet need and what needs to be done. Who wants to take that, first, from the Irish Thalidomide Association?

Ms Jacqui Browne

To be honest, we addressed many of Deputy Murnane O'Connor's earlier on and throughout the meeting. Out of fairness, I do not want to repeat myself too much. Ms Cassidy outlined the current supports. There are money-based supports and then there are supports that we are meant to have. The problem is that these supports are not universal around the country. We highlighted geographic issues. We know that this is an issue generally, particularly with the health service in Ireland, that some barriers are often geographically based. Even if you have a medical card, and you are living in Kerry, it is difficult to access the same service in Dublin with your medical card because that is a community healthcare organisation, CHO, area. There are practical so-called "systemic bureaucratic" barriers as opposed to inherent ones.

In terms of the Deputy's question about whether we believe that we are accepted and identified as disabled people, absolutely and quite definitely, thalidomide survivors very much are disabled people. We are disabled people in the context of the social model of disability, which is that the societal and political legal framework is what disables us, but - to create the distinction, clarity and understanding - our impairments are based on being thalidomide survivors.

We all need to live with impairments but our disability derives from the way society interacts with us, including the State and its institutions. Those are the main comments and I do not want to repeat everything we said. We have described in some detail the unmet need, the lack of joined-up thinking and the lack of response to a very small group of unfortunate people in this country.

Chairman

I thank Ms Dennehy, Ms Levin, Ms Cassidy and Ms Browne for their attendance this morning and for the evidence they have given and the challenges they have put to the committee. There was discussion on the ecosystems. I would appreciate if all that could be made available to the committee. The Irish Thalidomide Association has again put the spotlight on the primary medical certificate and the costs involved for people living in rural communities to access services in the large urban centres. Commitments given 40 or 45 years ago still have not been met. We need to follow up on the issues relating to that. We need to ensure we are giving a voice to them through our committee and we intend to do that. We will reflect on the evidence given this morning. If the witnesses want to add anything further, no matter how insignificant they may feel it is, I ask them to send it to us and we will ensure it is forwarded.

I thank our members for their dedication to the committee and their work on it. We are in a new setting now; I believe this is the first meeting of the Oireachtas Joint Committee on Disability Matters that is actually physically meeting. We look forward to further engagement with the witnesses.

The joint committee adjourned at 11.48 a.m. until 9 a.m. on Thursday, 10 February 2022.