Gather round children and I’ll tell you a modern story of justice and inequality.

Nathan was walking in the woods one day, whence he came upon a house and he went inside and found three bowls of porridge; the first bowl was too hot, the second was too cold but the third was just right. 

This tale sadly isn’t about bowls of porridge but payments for those who are disabled and receiving benefits. The state is concerned if we are given too much money, but also accepts we shouldn’t be given too little money. However,  receiving and spending the exact right amount in the exact right way is actually very difficult. How do you save for a “rainy day?” Do you set money aside and have a pension just in case something arises unexpectedly, like a car breakdown, the fridge breaks or a personal injury stopping you going to work. 

For me personally the loss of my computer can cause my world to shrink. 

But this is how the councils and society in general expect disabled people to operate. And in this cost of living crisis, when money is tight all round, there is very little support or understanding for people with a disability that prevents them from planning for a rainy day. What are they supposed to do? 

I have been through this “Goldilocks” scenario many times with the local Wrexham Council who always challenge my spending and fail to understand, empathise or support me when I face a real spending difficulty or domestic crisis..? For example, if my laptop broke I couldn’t communicate with the outside world. I’d have to spend money (unplanned) on repairing or buying a new laptop. But the money has to come from somewhere; so how are disabled people to save for this or another “rainy day?”

We cannot walk a spending tightrope which doesn’t allow saving for a rainy day or an unexpected crisis, which happens from time to time for me, disabled people and indeed everyone. 

However most people are able to put a little money aside to plan for big spending events such as Christmas or a holiday. They also save for a pension for later life. These options are not available for disabled people who have to plan in some other way? 

But we do need the state or the local council to be supportive or understanding about what we are having to deal with. The government legislation does give discretion to councils for “DRE” (Disability Related Expenditure). There is a minimum allowance with a 10% “buffer” for such expenditure, however that is a minimum; a floor not a ceiling. 

After a lengthy dispute with the council I am being allowed to re-instate shutter doors to each room in my house. However this comes at a cost of £450 + VAT per door; a total of £2,000+. I cannot afford such capital outlay and do not have any saved reserves. I am asking the council to accept that I have a need for doors which provide both fire safety and privacy and that this is essential in my case, which should be DRE. 

This is a real headache for me, but could be insurmountable for another disabled person. Why does society ask us to regularly walk this “tightrope”?