I am playing a waiting game at the moment. While the world and its Mother seems to be obsessed with Brexit and the future of Theresa May, I am continuing my fight to save the Welsh Independent Living Grant.

It is a difficult environment in which to get heard, but I have every confidence in the new First Minister Mark Drakeford. The #SaveWILG campaign team are waiting on tenterhooks to see if the Cabinet reshuffle will effect the politicians dealing with the WILG transition process. If it does, we will be hoping that the next Minister working on WILG will be more communicative than his/her predecessors.

It is a really exciting time in politics, but for those of us at the mercy of the decisions of Ministers it is a very stressful and often dehumanising position to be in. Last night, I went to bed earlier than usual due to the shortage of hours of support at my disposal. I wanted to make sure I could Tweet, #SaveWILG messages throughout Wales Live. In preparation for this, I spent the afternoon writing Tweets with my PA. Unfortunately, Windows 10 decided to update whilst I was eating tea and therefore I lost all 20 Tweets. I didn’t discover this until Wales Live was underway, but I still chose to try to send some Tweets by writing them myself. I managed 3 Tweets in the 45 minutes that Wales Live was broadcast.

I can’t explain how frustrating it is when your body will not do as instructed. These feelings are made worse because I am one of 1300 people whose lives are being undervalued and disrespected by the Welsh Government and Local Authorities. My evening was spoiled because of this and several other issues that would not have been a problem if I had the necessary support in place. I am talking about issues such as having to stop drinking at 20:00, not being able to adjust my heating or open a window, lying in agony without being able to straighten my legs, struggling to use a urinal due to poor dexterity and generally feeling abandoned.

The Minister for Children, Older People and Social Care has stated that this is just a problem confined to one or two local authorities. He is mistaken. The evidence we have collected through our Freedom of Information requests and the emails that we receive clearly show that this is a nationwide problem. I am hoping to receive permission soon to share another story from a WILG recipient who lives in South Wales, this will appear on the WILG Voices page of this blog.

This is a crucial time for the future of Independent Living and Disability Rights in Wales and the UK. I just hope that Mark Drakeford and his Cabinet do not lose sight of this amidst the chaos of Brexit.

Nathan