10th March 2016
Family Voice Conference, John Innes Centre, Norwich – Saturday 5th March 2016
Last Saturday it was my pleasure to deliver the opening address the annual Family Voice Norfolk Conference. Having spoke at the conference in 2011 and attended every year since it was amazing to see how much the conference has grown year on year and is a uniquely relaxed setting for parents of disabled children to come together, share experiences and meet with service providers from both the statutory and voluntary sectors.
Family Voice is a collective of parents and carers of children with special and additional needs working voluntarily and ‘Aiming High’. Their aim is to make sure that parents’ voices are heard when it comes to planning and decision making about services for our children in Norfolk.
My talk was based around the my personal experiences of the perceptions of disability services, where the Children and Families Act 2011 has taken disability services and my analysis of the future of disability services.
You can read the full text of my talk here:
“Good morning and thank you for the introduction Tracy and for that wonderful welcome; it was 2011 the last time I addressed the Family Voice conference and can I just say how great it is to be welcomed back – I must have said something right the first time.
For those of you who don’t know me, as it says in the programme, my name is Tom Garrod and I was born in the late 1980s with ataxic Cerebral Palsy. I always now say that I have Cerebral Palsy but, as my Twitter profile says, I don’t suffer from it; to be truthful those around me do more so. It may sound stupid, but I don’t notice the way or walk or my slightly slurred speech which are the things are evident to you as I walked up on stage. I don’t want to bore with the details but apparently according to doctors (who, as you will know, know everything) it takes me twice the effort to do any given task than the “average” person; so tiredness is an issue for me. Although those that are close to me would tell you my ability daily is dependent more upon my determination to get the job done.
I tell you this, not because I want to raise awareness of Cerebral Palsy, but actually make you think “What does my child suffer from?” And the answer is the social barrier of the disability they have and not the disability. For example, I’ve told you that at my stage of life my biggest barrier (or bugbear) at the moment is tiredness. If you type “disabilities that cause tiredness” in Google it mentions ME and MS and conditions like Chronic Fatigue Syndrome but not Cerebral Palsy. Throughout my life the bugbears of my Cerebral Palsy have somewhat changed;
from not being able to walk, to not being accepted by peers in my teenage years and the depression that caused, to not being able to get myself a girlfriend, to not having the courage to move out of the family home to go to university, to embarking on a career that demanded overnight stays around the country and building the confidence to ask a stranger “excuse me, I have Cerebral Palsy, are you able to help me to cut my food up?” ….The list goes on; yet if you type “effects of Cerebral Palsy” it comes up with ” Cerebral palsy can affect a person’s posture, balance and ability to move, communicate, eat, sleep and learn…” And not the struggle that I had to be accepted by my teenage peers or the tiredness which is my latest bugbear.
So this lead me to the conclusion that we don’t always need to address disabilities, but the effects or bugbears of disabilities. As soon as we start to look and to explore disability in this way in a social context, it opens up new possibilities for individuals particularly at an early age. When I was writing this talk I came across this quote which I would love to claim credit for but unfortunately can’t. It was posted online by a friend who was at a business seminar and it said “Don’t ask kids what they want to be when they grow up, but what problems they want to solve.”
When I read that, it rung a bell with me and something that I wanted to explore in this talk. You can apply that to a child’s career path and prospects but equally and perhaps more relevant to us today is how we apply this to a child’s personal ambitions. Myself, I went to a mainstream school throughout my schooling career, on to a sixth form college and in that time my disability had no effect on my academic achievements. In 2010, I was appointed Norfolk County Council’s Deputy Cabinet Member for Vulnerable Children and in that capacity had a meeting with Barry Payne, whom I have massive respect for, Headteacher at Parkside School. I remember walking into one of his cooking lessons, being introduced as Cllr Tom Garrod and then I had a lightbulb moment; I’d never learnt to cook, I couldn’t even do what the children in the class were doing. I’ve thought about this a lot, my parents, my teachers, paediatrician’s were so confidently focused on my academic ability, that in hindsight I missed out on the basics. Don’t get me wrong, there’s no simple answer to this and if there is, I haven’t worked it out – any answers on a postcard please. The Education, Health, and Care plans introduced by the 2014 Children’s and Families Act has gone someway in solving issues such as this – in theory anyway. When you go home later you’ll walk through the door and see your son or daughter and see everything about them; they’re lives academically and socially at school, their health and care needs, their likes and dislikes, their fears and their ambitions; if you can see that, why wouldn’t you want all the people that are capable of enhancing your child’s life (I.e the professionals) to see that? The Children’s and Family’s Act moves in the right direction but we still have someway to go. Putting my Local Government hat on for a second and I’m looking at colleagues around the room when I say that health really needs to come on board and not just look at the ship from the dock; not only is this the case with Children with Disabilities but the wider social care arena.
But the Act itself also doesn’t go far enough; among the aims of the Act is “to make sure children, young people and families know what help they can get when a child or young person has special educational needs or a disability”. Again, this is heading in the right direction but is based upon a huge presumption; that special needs exclusively need special services. If we go back to the theory I was talking about at the start of this talk, where we think about addressing barriers and bugbears of disabilities and not disabilities, suddenly, disabled children are open to a whole host of mainstream services that can be chosen by the people who know their bugbears best; children and parents. This may seem that I’m advocating an argument for personal budgets and yes I am, but I’m also arguing for a lot more. I’ll give an example.
When I was about 11 my best friend played for a Under 12’s local football team, after his first week and telling me how great it was I went home to my parents and said that I wanted to join my friend and the boys to play football. I got the “oh god” look that only parents can give and my mum still gives me to this day. After a discussion with the coaches, it was agreed that although I couldn’t play on a Sunday, I would be able to train with them on a Saturday morning. After 2 months and being able to play on a par with the rest of the team, the coach called me to one side and told me that he wanted me to play in the game on a Sunday. Ladies and Gentleman, it was like being asked to captain England. Don’t worry, he brought me crashing back down to earth with the next breath; “… But we’ve found out that we can’t insure you.”
When we think of Under 12 Sunday football teams we don’t automatically put them into the category of services for disabled children and nor should we; but let’s just take the theory for a second. You have a willing service provider, encouragement and consent from parents, physical and social benefits that the child (me in that case) will enjoy more and therefore will benefit more from than traditional services for disabled children. In short, we need flexibility; part of that could come through further legislation but the majority will come from a cultural shift in the way we think about services for disabled people, or as I like to say services for bugbears, which will come from every one of us in this room.
Be Passionate, be courageous, be your best.
Thank you for listening and enjoy the rest of today.”
Afterwards, I was joined by Nick to run a SoMe Workshop as part of the conference fringe. We had 8 willing volunteers from the Family Voice membership who had pre-submitted tweets including “Struggles, heartache, letters, disappointment, emails, calls, tears, delays, exhaustion. At last the school G needs. He deserves it so do we” and “The perfect storm: teenage daughter with autism and learning disabilities. Challenging but rewarding when we get it right”. Within an hour, these 8 tweets stimulated over 10 conversations which otherwise would not have happened. As part of the SoMe experience, participants then wrote responses which gave Family Voice as an organisation valuable feedback on the discussions that happened.
Outsiders CIC Consultant