I thought your story incredibly powerful. Tell me a little about your experience and what would you’d say was the hardest part about the ongoing education battle for Lewis?
Before Lewis was born, I had no awareness or understanding of what life is like for learning disabled people and their families or the struggles that they face daily. Constantly keeping up with the bureaucracy that is demanded of you as a parent carer whilst looking after a baby meant that a return to work at that point was impossible. I felt totally invisible in this society as a parent-carer and that it was going to be yet another battle to get him into an appropriate educational establishment that would meet his needs. I realised that if I wanted to change things and really challenge the system, I needed to understand the law and be a part of the change that I wanted to see. I thought that if I trained to become a barrister, perhaps I could advocate for families facing injustice and discrimination.
I applied in March to study for the Graduate Diploma in Law at Swansea and commenced studies in September 2017, and that was the start of a huge change for myself and my family. At the same time, I was starting to spar with the local authority over several issues with Lewis and his education and Statement of Special Educational Needs. The more I learned at university in that short and intensive year about the law and how to research it and use precedent as well as about children’s human rights in the public law module, the more confident I became to fight our corner. It took a tremendous effort to research our case with the deadline looming for our last chance to appeal a decision made by the Local Education Authority, I felt as though I had spread myself so thin, that I would fail both as a law student and in my job as a mother to get the right help and support for my son.
You’ve successfully completed your Masters, with the hope to pursue a PhD is that right? What do you hope for the future, following your studies?
In December 2019, I graduated with a Masters and immediately applied to the Economic and Social Research Council for a scholarship to undertake a PhD. I won the scholarship just a few weeks ago and I am excited to embark on this next stage of my academic career which I hope to use to lever policy change and a legislative overhaul that will promote rights-based approaches to supporting learning disabled and autistic individuals and their families. I am hoping to use a fully inclusive approach to the research I undertake thus giving a voice to those rendered voiceless by both disability and to a greater extent, barriers created by society.
Having experienced many obstacles yourself, what are your thoughts on the recent news that coronavirus tests have been denied to people with learning difficulties despite a 175% rise in their deaths? Would you say that there is a huge problem in the way in which people with disabilities are being treated in the UK, having been seemingly unaccounted for in this global crisis?
It is no surprise to me that the learning-disabled population have once again been marginalised and forgotten in this crisis. Their lives are not valued by the executive in the same way as those without such disabilities and they are and have been once again, treated as second class citizens and an afterthought. Families of disabled children have been left without any means of practical social care and support as well as being unable to send their children to school. That’s on top of rights being stripped away in terms of the local education authority obligations towards children with additional needs which have been significantly impacted by the so called temporary ‘COVID legislation.’ These children and their families have once again been forgotten.
What advice would you give to someone who was in your position, before Lewis started at Gwenllian Education Centre?
My advice to any parent facing a battle for educational provision would be in the first instance, take a deep breath and realise that there is no quick fix. I was so fortunate to have an amazing support system in my husband but I know not everyone has this – try and find someone you can talk to and rely on to help you through the difficult times ahead if you can.
My generic advice would be, start keeping records of everything. Any correspondence with health, education and social services, file it and refer to it as needed. Learn as much as you can about your child and their diagnosis – you are probably already the expert in their needs so use this information to your advantage. This will all come down to evidence at the end of the day – not how we feel about our child, but how far we can evidence their needs and that those needs cannot be met in the provision preferred by the local authority, but can be met in whichever place you have researched as the best fit for your child.
Would you say that your law degree, coupled with your experience as a mother, has given you the power to make a difference to others and lead them away from the struggles you faced?
I think that having both the emotional and physical experience of being a parent carer, combined with the academic credentials I have obtained in recent years, makes for a powerful force for change. I have an intrinsic motivation that makes what I am trying to do very viscerally, whilst simultaneously having the grounding ability of knowledge of the law and what you need to do to form a compelling and persuasive argument for change.
The path I have chosen is one where I hope to help the many, by changing things at a policy level, rather than the few individuals who can afford to pay for legal support. I think the most important element in all this will be that parent carers will trust me and open up to me because of our shared experiences and collaborating with families will be a vital cog in the wheel, as I conduct research with families and learning disabled individuals for my PhD.
You successfully completed 9 exams in just 10 days during your studies, clearly demonstrating your relentless hard work and determination, which I’m sure is just the tip of the iceberg. Would you say experiences as yours make you more hardworking for all aspects of later life?
Taking those 9 exams in such a short space of time is the most gruelling thing I’ve ever done. For me, I had to come straight off the back of the exams in August, to write a 20,000 word dissertation that had to be submitted in September and I was emotionally, physically and mentally exhausted at the end. I know that I could never have done this without the strength and endurance I have built up over the last nine years being a parent carer. Having a disabled child and seeing how hard he must work for every success in even the most basic of tasks gives you perspective and is actually very humbling. I had so much support given to me by the university and the staff because they could see how hard I was working and how difficult things were at home. I’d love for anybody reading this to believe in themselves and to work hard to get the results they deserve – it’s not easy, there will be many setbacks in life, but you will get there in the end.
Do you have any distinguished memories from your time at Swansea that you’ll hold on to?
There are so many. However, I think the most incredible part of the whole experience was the friends I made who are now friends for life. Both the GDL and the Masters/Legal Practice Course were intense periods in our lives that you can only really understand if you’ve been through it. We often joke that the GDL was both the very best and the very worst time of our lives!
We felt like we were living at a 1000 miles an hour but we were on the treadmill together – it was such an incredible bonding experience and we helped each other through the course and listened to and dealt with each other’s personal problems as they arose. We laughed and we cried, we drank copious amounts of coffee and probably a bit too much gin, but we all got to the finish line together and I honestly believe I could not have done this without the power of those friendships.