Kimberley Edwards has lived with Friedreich’s ataxia (FA) for over 20 years and has now started the fantastic campaign Places to Change: calling for local authorities across North Wales to listen to the needs of people with disabilities, and to ensure there is accessible facilities for everyone. Here she shares with us her personal story of living with FA and the reason behind this campaign.
The clumsy one
I was diagnosed with FA at 11 years old, although my symptoms became apparent from the age of 10. One of the first factors that indicated an abnormality about my body was the way I ran; my legs would flick out side-to-side rather than be in line with my body.
Ever since I was young, everyone has known me as ‘the clumsy one’: always falling over, always dropping things, and an all-round accident waiting to happen. My parents would ask me to make a cup of tea, but then ask my sister (who is six years younger than me!) to carry it through to the living room – they knew I’d get them only half a cup, whereas a four year old would get it to them in one piece.
Another time, my grandad made us dinner one evening. My sister took her plate successfully out of the kitchen, but I didn’t make it out the kitchen before I dropped my plate on the floor. I then dropped the second plate, and Grandad rang my mum and booked me in for a doctor’s appointment.
As predicted, the blood tests came back indicating something wasn’t right. I was referred to the Glan Clwyd Hospital in Bodelwyddan, Wales for more tests and a MRI scan. I then received my diagnosis of FA 12 months later in my last year of primary school.
A progressive decline
FA is progressive, which means my mobility has been on the decline since my diagnosis. Between the ages of 11 and 19 I would manage without any walking aids, but after that, I transitioned to a walking stick, and then a walking frame. I started using a wheelchair at the age of 24 and then progressed onto using an electric wheelchair.
It has become very clear to me that the more disabled you are, the more excluded you become within society. I was very independent before my spine infusion operation in November 2017, but afterwards everything changed for me. I needed carers to help me with daily tasks such as getting dressed, washing and transferring from one place to another – daily tasks that an able-person wouldn’t think twice about.
Lack of changing places
Although I regularly access my local community, it’s not easy due to the limited toilet facilities in North Wales. The lack of facilities results in me not able to leave the house for more than a couple of hours, meaning I cannot pester the people of my local community as much as I would like.
I feel that people affected by this very debilitating issue, including myself, are getting ‘around it’ by either not going out, setting strict time limits on their activities or relying on places such as designated day centres. Having the appropriate changing facilities will provide us with the opportunity to do what we want, when we want. We’ll experience social inclusion rather than exclusion, and therefore, a sense of fulfilment, respect and independence.
Places to change campaign
The goal of Places to Change is a society where everyone feels comfortable, whether that’s being able to leave the house for longer than two hours, or not having to wonder whether a changing facility will have the right equipment. This is why I have started the campaign. I started out alone but each day I am joined by a new person on the Facebook group which is really encouraging – I need you to help make a change. Whether you have a disability yourself, you care for someone else, or neither applies to you, please stand with us to make a happier place for everyone.
If you’d like to join the campaign, visit the Facebook page https://www.facebook.com/to dalooo/