Dr. Margaret Kennedy:

I am delighted to be present here today and I thank the chairman, the committee members and especially Deputy Robert Troy for the invitation. I have entitled my submission, "Disability transport in Ireland: apartheid or equal?" I have a very rare neuro-muscular degenerative disease that I share with my twin sister, hence the wheelchair. I am a disability rights campaigner and activist. I do not belong to a group or organisation. However, I have a Facebook forum entitled "Wheelchair Rights Ireland" which has 500 followers. We are advocating for better wheelchairs for people who need them. It is sufficient to say that wheelchair provision in Ireland is very poor, and that is where transport begins for many.

All disabled people are my concern. There are 600,000 of them, 13% of the population, and they have been left behind. We are calling for transport rights inclusion. Wheels are my focus. Freedom is my focus. Equality of participation in all areas of society, by all disabled people, depends on wheels. That includes wheelchairs, scooters, buses, trains, the DART and the Luas, although one might call them tracks at that point. Going places is key to living. Travel is wonderful for all disabled people, whether they are visually impaired, deaf, wheelchair users, learning disabled, older or frail. We love freedom.

When the committee members rolled out of their beds this morning the only thing they had to think about was how they would get here. They probably decided on using their cars. However, disabled people no longer have the cars they used to have with the mobility grant or the motorised transport grant, which were removed in 2013 and never replaced. There was a promise to replace them and the money is ring-fenced, but where is that money now? Many rural disabled people and severely disabled people who cannot use public transport depended on those grants.

With regard to buses, people have given me examples of the problems with buses. Brid in County Limerick said that her daughter has a free travel pass. They live in County Limerick outside Limerick city. The local bus runs there twice a day but her daughter cannot use it because she is a wheelchair user and the bus has steps and does not have access. Brid said this is a disgrace. Catherine said that her son cannot travel on the school bus to secondary school as there is no lowering step and he has a physical disability. Although she has told Bus Éireann several times about this, in 2016 and 2017 the private contractor still did not have a lowering step. Now Catherine drives him to school but he misses travelling with his mates and the other students on the bus. Claire, a Bus Éireann employee, told me that all Expressway buses have lifts for wheelchair users but the lifts can be used only where the footpaths are at the right level. The footpaths around the country are still not upgraded by the councils. Apparently, this was supposed to be done in 2016 but the employee said that it will probably take until 2026. This woman said, "People with disabilities should not be restricted like this. I thought we were all supposed to be equal to others". This is separating us from society."

Frank travels from Donegal to Dublin. He says he is lifted bodily, under his arms and legs, out of his wheelchair and up the bus steps. He says it is humiliating, degrading and dangerous. Sometimes the bus staff do not want to help him, so the other passengers do it. This should not be happening in 21st century Ireland. Sorcha said that having to use only the front door of the bus is inaccessible for many wheelchair users and is unsafe for others. It means one must fit into the narrow hallway between the driver and the door. A power chair like hers should not go downward at an angle as it results in her falling off the ramp and getting stuck. This is not because of her or her wheelchair but the ill-considered bus design. It happened to me too.

I have fallen off the ramp several times and do not travel on buses anymore because I am now too scared. This shows the apartheid and separation in bus travel. The causes of our transport difficulties are not our disabilities but, rather, issues ranging from the failings of county councils and bus design to broken ramps. There is apartheid across private and public bus travel and it affects the lives of disabled people, particularly in rural areas, which leads to isolation, separation, frustration, danger and a sense that we are not being catered for. It is not our bodily conditions or diseases that make us disabled but, rather, the structures in place. Our disability is politically constructed. The real cause is disability discrimination and an unwillingness to sort out access issues or regard us as equal passengers. We rely on accessible taxis, despite our low incomes as sometimes they are our only transport lifeline. However, there are too few accessible taxis and many taxi drivers do not want the hassle of loading us. Sean who is sitting behind me has stated he booked an accessible taxi five hours in advance but it did not turn up, leaving him to wait in the freezing cold for one and a half hours . He had to make alternative arrangements. Mary stated the HSE had booked an accessible taxi to take her home from St. Vincent’s University Hospital after a hospital appointment. Her appointment was late starting but finished at 5 p.m. She waited for three hours at the doors of St. Vincent’s University Hospital for the taxi to arrive and was distraught, exhausted and crying. She telephoned a friend of hers who is an RTE reporter who organised and paid for an accessible taxi. The Government needs to roll out a grants scheme to enable us to get taxis and increase the number of accessible taxis available.

Air travel is also a nightmare for many. Some companies damage power wheelchairs when off-loading them from aeroplanes and many provide no accessible toilets or spaces for wheelchair users. I was once seated on an aeroplane and saw a head bob up beside me. It was that of a disabled man who was bottom-shuffling down the aisle to get to the toilet. The indignity and humiliation is not difficult to perceive.

Rail travel is not very different. Lifts are often broken, while broken or switched off emergency call buttons on the DART are an almost permanent feature because children press them and staff turn them off.What if an emergency occurs? My twin sister who is present has Crohn’s disease and a neuro-muscular disease. She has had several terrifying episodes when she needed to get off a train urgently but the emergency buttons were locked. What if someone has a heart attack? Disabled people have to endure broken ramps and station staff forgetting that they are booked in, or worse, get them off the train. That happened to me once while travelling to Dublin from Limerick. It was late, around 9 p.m., and I was exhausted. My neuro-muscular degenerative disease does not cope well with tiredness. I was flopping all over the place and needed my bed, but the staff forgot about me. The train arrived at Heuston Station and everyone got off but me. I was left in darkness at the end of a very long platform with not a soul in sight and became very scared. About 20 minutes or half an hour later a single cleaner arrived and I was rescued.

The fear and anxiety of travel cannot be underestimated. Will they get me on? Will they get me off? Will I end up in some godforsaken place? It happens. That is not what members experience. Why is that? Is this travel apartheid? Why? Is the answer because we are disabled? No, it is because we are not considered. It is not about equality but, rather, discrimination and we must label it as such.

On one occasion my twin and I got on the DART at Greystones and had not booked 24 hours in advance.However, as it takes one hour to get to Connolly Station, we telephoned to say we were on the train and would need a ramp to get off. The officious woman in the Irish Rail office said she could not guarantee that we would be helped off the train. We were already on the DART.Were we to stay on it for 24 hours until the required notice was given? I told her that we were on the DART, but she repeated that she could not guarantee we would be helped off the train. We agonised over whether we would be assisted at Connolly Station, but on that occasion we were. Requiring 24 hours' notice of travel is an apartheid rule. It is a separation from the rules for non-disabled people. Why do different rules apply to us? Non-disabled people can arrive, hop on and hop off any time they want, but we are marked by our disability and destined to need help. We must, therefore, book in advance. The Minister, Deputy Shane Ross has jubilantly declared that we will now only have to give four hours' notice under a pilot scheme, as if that means equality. It does not. I do not want to give any notice, nor do many other disabled people. To have to give four hours' notice means that I have no choice, cannot change my travel plans or go somewhere on the spur of the moment and that I am not free. The requirement to give four hours' notice is not an improvement on the requirement to give 24 hours' notice.We do not want to have to give any notice, as non-disabled people do not. I want to arrive, get on, get off and enjoy my freedom. To have to plan every single journey is a nightmare. It is discrimination. Non-disabled people do not have to do it. There is separation. It would not happen if stations were staffed. We demand that all stations remain staffed. It is unacceptable to take staff away from train stations. We want to be able to travel freely and when we want to, as non-disabled people do, and that can only happen if stations are staffed. Every bus and rail station in the country must be staffed.

Why can we not be part of the travelling passenger community and go our own way with freedom and access? We cannot because of discrimination. Our bodies are not accepted and we are marked as being different and, being different, cannot expect equality of travel. Ireland has not yet ratified the UN Convention on the Rights of Persons with Disabilities, ten years after it was opened for signature. We are not accepted as equal in this country. Ten years on I am still not equal and there is an unwillingness to see us as equal or to make us equal. There must be a concerted effort to make us equal because it is discrimination not to do so. We cannot expect things to be made easier or accessible. We cannot expect humanity or to receive support while travelling. We are made to deal with frustration, apartheid, separation, fear, anxiety, broken ramps, there being no station toilets, being forgotten on trains or being forgotten and left on freezing cold platforms, with there being broken lifts and escalators, with unstaffed train and DART stations, no wheelchair spaces, narrow train and bus design, switched off alarms on trains and more, as if we did not exist. We are not thought of in the scheme of travel in Ireland.

Marsha De Cordova, an MP in the United Kingdom, said it was a political choice to build a transport network that so often was inaccessible.She calls it a political choice.That is where equality happens. This is a European country. The President of the European Parliament, Mr. Antonio Tajani, stated:

Our commitment to improve the lives of persons with disabilities is founded in our values as Europeans, including our attachment to freedom, equality and inclusion of all individuals in society. These values have to be translated into concrete actions, to enable every person to live an independent life, and to make sure that our society empowers everyone.

Concrete action is urgently needed on transport provision for disabled people of Ireland. So far, we are in an apartheid of travel discrimination, which must change. What is broken needs fixing and what is inaccessible needs to be made accessible. This is a political choice and the members need to make it happen. This is our public transport too and we deserve, as full citizens of Ireland, simply to be able to get to the station or bus stop, get on, get off and travel freely, safely and without fear and anxiety. This is the members' political choice and I call on them to make it happen.