George Tappenden: “No just isn’t an option”

The adjustments George’s school have made are impressive. The school have made all the exterior spaces accessible, giving access to all three main buildings. They’ve installed a changing place and provided designated parking, accessible handles and fobs, and accessible technology and tables. Every year they do more – they are phasing the process because of money.  

The school has organised the training of thirteen members of staff in manual handling, hoisting and George’s cough assist. They have also allowed him to work from home if he is tired, ensuring that this does not affect his attendance as his work is being completed. He does a four-day week with the assistant SENDCO coming to his home for one hour on his day off to do class work with him.  

Here is the speech George gave at the recent National Equality and Diversity Awards, which includes his experience of education as a Young Disabled person, how he worked with his mainstream school to get his support needs met, and how he campaigns for the rights of all Disabled people: 

“My name is George Tappenden. I am thirteen years old and have a condition called Spinal Muscular Atrophy (SMA). Thank you for having me here today. I was honoured to receive the 2024 positive role model award, and I wanted to start by telling you all a bit about my work.

I am a big campaigner and took part in a community campaign to fight for the first ever treatment for Spinal Muscular Atrophy. This drug is called Spinraza and is given via lumbar puncture. I have protested outside NICE, spoke in the House of Commons, ITV, Sky and BBC News, live radio and was interviewed for local and national newspapers including the Daily Mail. 

Whilst the fight for treatment happened in the UK, I decided to travel to Paris for just under two years to participate in a trial for the first oral drug for SMA and second ever treatment, called Risdiplam. The evidence and my experience with Risdiplam were then used at the appraisal with NICE here in the UK where it was approved via a Managed Access Agreement and so was Spinraza. My photo now appears in the Risdiplam instruction booklet for the drug. I was also chosen to speak at the Pharma company last seminar to give an insight into my life with SMA and how treatment has helped me – hoping to help others and reinforce the need for continued research and awareness into SMA. They also spent a day filming my life to show a true insight. 

I am very passionate about inclusive media representation and the difference it makes to Disabled children’s self-esteem and self-body image, so I model with Zebedee Talent. One of my jobs was a life size photo taken of me in my wheelchair and it was used by a leading supermarket in every store in the UK, one of the first to use a power chair. I also appeared in their TV advert. 

I fight for accessibility rights in my town. I have done interviews and spoken with MPs – even to get my own adapted home purpose built due to lack of accessible housing. 

I also fought to remain in mainstream education and spoke about the importance of inclusivity and choice. This fight I won with the help of ‘St Gregory’s Catholic School’ who made adaptations for me which will pave the way for others in wheelchairs. I now speak regularly to all year groups in assembly about the importance of Inclusion within school and friendships.

On 18th May last year I made National News again when an investigative journalism team from Sky came to film me for the day for a documentary on how the Government is failing Disabled children. They focused on accessibility with me, and this has been aired several times already this year. 

I have gone through quite a bit, from illness, losing strength and abilities, to a trial, a spinal fusion and then to missing a lot of my education and time with friends. However, I still do very well at school and have won two awards since starting Secondary one being for ‘Fantastic Influence and Work’ and came in the top percent for all my end-of-year exams. 

Since treatment I now play the drums and achieved distinction in my starting grade this year (which is amazing considering six years ago I lost so much strength I could not push two Lego pieces together), and I also did my first public speaking exam with LAMDA so I can advocate better for others and myself. I achieved a Distinction in Grade 3 for that year.

Finally, I was awarded the amazing Positive Role Model Award for Disability this year at the 2024 National Diversity Awards. 

I believe my work has specifically impacted the Spinal Muscular Atrophy community when it comes to accessing treatment. We still need to challenge the fact that a Disabled person’s life is still not being viewed equally or just as worthy of saving or helping compared to those without an impairment. Highlighting that money spent on treatment for individuals impacts every patient positively, and quality of life should not be measured by physical movement, is important.

The assumption a Disabled person’s life is not a successful one, contributing to society is dated, boring and untrue. 

Getting my school made wheelchair accessible would have impacted children locally with physical needs as out of seventeen mainstream schools in my borough only one was wheelchair accessible but now there are two, giving children and their families at least a choice and also making sure ALL children learn in a diverse environment leading to a more inclusive world. 

My work modelling school uniform I hope made a difference with how children feel when shopping and buying clothes. School is daunting enough but when there is little to no media representation out there it can make you feel very alone, so if they saw something in me that resonates with themselves then my job is done. 

My media appearances I think have helped to raise awareness on accessibility issues and the lack of inclusive playgrounds, at the very least giving those in power food for thought.

Lastly, I believe by me sharing all my workout and physio sessions online I’ve helped those with impairments learn and get ideas who do not have access to such resources making sure the sessions are practical and not with expensive equipment, making them financially accessible too. 

Since winning the national diversity award I have been made a National Ambassador for the Children’s Variety Charity, and I will be speaking at Soho House next month to its biggest donors about the importance of disability equipment and independence.  

• I was placed in the top 100 most influential Disabled people in the United Kingdom by Shaw Trust with the likes of Stephen Hawkings once listed. 

• I am being filmed and interviewed at home for a short documentary piece by Variety.
  I have joined my local Lib Dem party who have a seat and will be working closely with them on accessibility in my local area. 

• I met with the local Mayor and was given an award by him for my work in the community.  

• I have appeared twice on Sky News, First News and local papers. 

• I will be taking part in a podcast in a few months on disability and children. 

• I was interviewed by Great Ormond Street Hospital where my story has been shared on all their platforms raising awareness on National Disability Day.  

For my personal journey I have joined a local boxing class, been predicted straight A’s and A-stars for all my GCSEs, except PE… BUT you can’t win them all. And I continue to share all my physio, PT sessions and drum lessons online to help or motivate Disabled people  

Advice I would give to others with an impairment is to be accepting of your impairment and be proud. To know you can do anything but to do it in your own way.  

My motivation is to make change for the better and to make the world a more inclusive and accepting place. My message is to never give up. Always challenge and push boundaries. No just isn’t an option. 

Do not look to the next person, YOU are that person. Nothing good, EVER came from doing nothing.”