Mother of severely disabled son calls out government inaction over energy crisis

Caroline, who lives a mile away from her son Lee Martin, 37, in Enniskillen, Co Fermanagh, is not only his full-time carer but also his fiercest advocate in a system that seems intent on marginalising disabled people by making the process of claiming for PIP such an arduous one, and keeping the benefit at such a low rate that many disabled people feel they do not have enough money to lead dignified and integrated lives wherein they are fully embraced as part of the community.

Lee has a chromosomal disorder named diploid triploid mosaicism (DTM) which means he suffers from a wealth of difficulties including scoliosis or severe curvature of the spine (he is six foot two but confined to a wheelchair with a much smaller frame, and his condition means that his organs are uncomfortably compressed), and over the past three years he has developed COPD meaning he is reliant on nebulizer use three times a day and a CPAP machine because his breathing would stop at regular intervals, leaving him hypoxic and then highly prone to infection.

Lee is the only person in Northern Ireland with the condition, suffers from learning difficulties and is in a lot of pain daily, for which he is prescribed a lot of medication. He gets cold very easily, which only exacerbates many of his symptoms and moving between rooms of very different temperatures can trigger an asthma attack.

Because of his health he lives in a carefully constructed bubble at home, wary of anything that might trigger his many allergies, reliant on carers coming in and out to assist him, and his main passion is for technology; confined to his wheelchair, with breathing problems, a well-heated home is his haven and talking to others online is his lifeline. His mother Caroline, 56, is on call 24/7 and although she clearly adores her son, has suffered massive stress trying to fight the system to secure the money and care he is entitled to.

"I’m tired of our politicians putting flags and emblems, green, white and gold, and red, white and blue, before the welfare of human beings and particularly repellent is when the most vulnerable become victims of this as they currently are, because we now need our politicians at Stormont to do something about the energy crisis that will negatively impact so many this winter who have higher energy costs because of complex health needs,” said Caroline.

“There they are [politicians] on a great wage, but not sitting in the Executive to tackle core issues that are vital to people’s survival this winter. It’s not acceptable and I don’t think politicians should be paid if they are not going to do the jobs that we elected them to do.”

As the energy crisis – a key component of the cost-of-living crisis – deepens and the temperature drops, Lee is one of those who, because he is reliant on electronic machinery including a motorised wheelchair and nebulizer, is part of a growing impoverished demographic described by Disability Action’s head of policy Nuala Toman as having to “choose between whether to eat, turn on the heat, or breathe”.

"As well as trying to stay warm, Lee, like many disabled people we are hearing from, is having to ration access to electronic machinery which he requires in order to live, and Lee needs this in order to be able to breathe and obviously to live.

"The situation at the moment is dire for disabled people and other vulnerable people across Northern Ireland who cannot afford heating bills or enough to eat and yet at the same time we have politicians failing us by refusing to sit at Stormont and act to address the cost-of-living crisis. This is not an issue that can wait. Unless something is done people will die this winter because of the cost of energy bills and that choice so many are having to make between eating, turning on the heating or using electronic machinery to breathe.

"Our information and advice service has engaged with hundreds of disabled people who are so concerned that they are not going to be able to cover the rising costs.

"Pre-crisis we conducted research that showed that 78% of disabled people did not feel that they had enough money for a decent life, and this was before energy costs began to soar – so you can imagine how this demographic is feeling right now.

"From our case work we are aware of disabled people who do not have enough money for food, for heating and who are finding it exceedingly difficult to run their life-saving equipment in their home. This is equipment that people cannot afford to switch off because an electricity bill is too high.

"We know that disabled people are going without meals, are reliant on food banks, are extremely frightened of what lies ahead during the winter months and we are asking for our politicians to stage an immediate intervention and do something about this before temperatures drop further.”

Disability Action, in line with disability organisations across the UK, are asking that disability benefits be increased by 13% per month, in tandem with inflation.

"This would lift a considerable number of people out of poverty,” adds Nuala. "It seems to us that those who are reliant on benefits are not being given the opportunity to participate in life in a dignified manner.

"Without intervention, and we know this from previous situations of crisis, disabled people will die this winter.”