To say I am angry is an understatement. Yesterday when I arrived home, fully of optimism about our country and its desire to put the patient (I am writing a post about this too), to find a letter from Social Welfare. Readers of my blog know I have Multiple Sclerosis, and I have the Secondary Progressive form of this disease which implies I will only get worse, but I will not get better. This illness is incurable and degenerative. This letter, which you can see below, is informing me to give them details of any holidays I have had outside the country, and if these exceed two weeks, I will have to give them back some Disability Allowance paid.
There is a similar rule for those in receipt of Jobseekers Allowance. I can understand that if someone is a Jobseeker that going on a holiday means they are not available for work, and so they should suspend the payment. However, I am DISABLED PERMANENTLY, and the work I do is remedial.
There are a few things about this payment which I find to be discriminatory.
1. Medical Costs: They allow expenses in connection with work to be deducted from you means, so if I have to spend money on transport, clothes or equipment for work they deduct them from my means assessment, but my medical costs are not deductible from my means. By being sick, I have extra costs which someone who is well does not have to pay. Medicine, therapies, devices, the list is long, and I have had to spend money on these (like Sativex at €525 per month) which are a necessity for my quality of life. But they do not consider these.
2. Income Assessment: When they assess my means they include the income of my partner, and they say I can use part of her money for my use. That is her money, which she has earned and I have no right to use it, or take it, but the Irish State believe I should. The reduction in my payment because of that income is €48.30. Somehow I am supposed to live on less money, because of someone else’s income. If I was in hospital, or a residential home, they would deduct nothing, and if I was living alone, I would get the full allowance plus a living alone allowance of a further €14. So if I was living alone I would get €217 per week plus a rent subsidy, but I get €154.70, €62.30 less per week, or €3,239.6 a year.
3. Holidays: I do not work, and can never work like a healthy person because of my illness. Holidays don’t allow me to escape from disability. One thing which improves my condition is dry and warm weather, which we don’t have in Ireland. Here it is wet, cold and windy (especially today). The anomaly of this two weeks abroad is if I spent a month in the sunny southeast of Ireland on holiday it would be fine, or if I was in hospital, or residential care, I could still get the allowance. The full allowance, and there would be no deduction because of the income of the other residents in the building. I am not sure what is the purpose of this arbitrary rule. Do they think I will not be available for work? Even when I am at home, I am not available for work.
A life restricted by illness is tough. Really hard, and every day I have a struggle to look at the positive, and be grateful for what I have. Over the years, despite the inexorable decline, I am positive, trying to see the good. But when a letter like this arrives through the door with a threat of suspension of a meagre allowance, which would push me into homelessness, I despair. It is cruel beyond imagining, and the worst is I don’t even have to imagine it. I have the threat in black and white, cold and dispassionate.
I will reply to this letter, and will plea my case, but my fear is it will fall on deaf ears. They have a rule to implement, and they cannot alter it because of my bleeding heart. The blood-letting will continue until there is nothing left. Ireland, through its institutions, does not like the disabled or ill, and it is doing everything it can to marginalise us, leaving us at the periphery.
At the Conference during the week they spoke about inclusion, support, integration and lots of fantastic words which gave me hope. Great optimism for medicine, putting the patient at the centre. In fact the Irish People, through the taxes we pay, funds the Health Research Board (HRB) and the HRB is requiring researchers to include the patient in every part of research. It is fantastic, but another part of the Irish State is doing the opposite. The Government must be consistent and fair.
I live my life with Secondary Progressive Multiple Sclerosis, Sarcoidosis, Asthma and Chronic Pain. Trying to live the best life I can, 30 minutes at a time.