Welcome to my “mini-blog” (Abridged version)

I am a full time wheelchair user and live with a progressive, genetic disease of the nervous system known as Friedreich’s Ataxia (FA). This debilitating disease only affects one in 50,000 people.  The median age of death of a person with FA is 35, so at age 47 I might be living on borrowed time.

• As a disabled person, unable to work there is no such thing as a pension to live off; so, I am at the mercy of the state, for good or ill and the compassion of local authority staff. However, when an individual comes up against the state, the individual can seem to be a nuisance, so that he needs to be swotted away, unless he accepts what he is given gratefully.

• I receive Direct Payments from Wrexham Council to pay for my social care. They have clawed back £33,000+ of Direct Payments in 2023 and another £3,700.50+ is currently in the process of another clawback. The council say I cannot spend the money on things I need to take care of myself, such as bibs, hand sanitiser and a “T bar” sleeping system. This is the very clunky Goldilocks theory of disability; “You shouldn’t have too little to live on, but you mustn’t have too much to live on, it’s got to be just right”. I am therefore constantly walking a tightrope over what money I have, what I can or cannot spend it on and arguments with the council about merely “existing” in my home or living a lively, happy and fulfilled life in the time I have left. This isn’t a good way to live (exist).

• Money aside, in Wales social care is largely governed by the Social Services and Well-being (Wales) Act 2014 (SSWBA 14) with 5 guiding principles: Voice and control, well-being, co-production, prevention and early intervention and multi-agency. The local authority seems to ignore the first three of these, so that I cannot take control of my life.

• My latest campaign proposal is for a Commissioner for Disabled People. I hope you will support this campaign. It should be noted that Scotland has returned to an ILF (Independent Living Fund) designed to help disabled people to live their best lives. As a campaigner on behalf of disabled people, it is my ambition to secure the Scottish example here in Wales and England.

• Article 19 of the UN Convention on the Rights of Persons Living with Disabilities is quite clear that our rights are equal to others in the community.

• I will send further updates when there are developments in my situation. I am doing a fundraiser for Ataxia UK via my JustGiving page. Here’s a link to my JustGiving page: https://www.justgiving.com/page/nathan-lee-davies12-02-77