Ursula Marshall

If we want change now is the time to do something about it. DRILL will provide us with the vehicle to effect this change.

On Sunday 14 December 2003 my life changed forever.  I had taken several hours and umpteen attempts to get downstairs and had no clue what was happening to me.

The previous evening I had been to two work functions – you know the sort – networking! Anyway I was feeling very tired but put it down to the flu and chest infection I had had all week.

I had been experiencing other strange manifestations that week – pins and needles, loss of balance at strange times and an overwhelming sense of weariness.  That night I finished up in The Royal Hospital in Belfast and I haven’t been up my stairs since.

What I didn’t know then but I know now is that I was about to become 1 in 5 of a constituency known as ‘The Disabled’!

I’ve also learned a few other statistics in relation to my condition. GBS affects approximately 1500 people a year in the UK.  Of these about 90% recover in 2 years. The other 10% have varying degrees of recovery including 1% who die. Apparently I was very close to the 1% but am lucky to have dodged that one. So I am the 1 in 10.

Listening to the news at the end of 2015 there was a report that the Disability Discrimination Act was 20 years old.  The clip showed demos and protests by people with disabilities prior to this legislation being enacted. This was followed up in Disability Discrimination Order in 2006. How lucky I am that I came to this world after these things happened and not before.

In the intervening years since becoming disabled I have had to adjust to doing things differently and dread to think how I would have coped had the world around me not begun to change. I have used both pieces of legislation in my new life to challenge complacency in regard to compliance.

It would seem then that the effective way to bring about change is to make a nuisance of yourself in a very public place!  But I think the ground work has been done by those pioneers of the 80’s and early 90’s and it is up to us to build on that and the best way to do it is to arm ourselves with relevant and current information and that is why DRILL is so exciting.

In 2016 DRILL is part of an environment in which the implementation of the UN Convention the Rights of Persons with Disabilities is being ‘discussed’; Northern Ireland government departments are being ‘shuffled’; an election is coming and the new councils are ‘consulting’. There cannot be a better time to provide research results that give solutions to today’s challenges to independent living.

We are being presented with a unique opportunity to fully research any and all aspects of our lives.  This data can then effectively inform policy makers and in turn bring about change which is meaningful. The Lottery has funded a 5 year programme which will involve people with disabilities at all levels. It’s about doing with and not for in regard to it’s approach.  The research will be directed and selected by people with disabilities.

It is vitally important that people with disabilities engage in this fully and I would encourage everyone to avail of this unique opportunity. DRILL will be different – it won’t be piecemeal, it will have depth because the experts will have completed it – the experts being the people who live their lives with disability and are consequently best placed to do it.

So if we want change now is the time to do something about it. DRILL will provide us with the vehicle to effect this change.

Blog post by Ursula Marshall is a member of the DRILL  Northern Ireland National Advisory Group.  She has a 25 year history in the community and voluntary sector on welfare rights, homelessness and women’s issues.  Since 2003 she has been involved in the disability rights through the Cookstown Disability Forum and with Disability Action.