My name is Tori, I'm fiercely independent and I was diagnosed with Spinal Muscular Atrophy type 2 at 18 months old. I'm now living my life, exactly as I choose to. Having a neuromuscular condition doesn't control my life; I've just found different ways of climbing over those hurdles.
Independence has always been a key factor in my transit into adulthood, and so I decided to move away from home in Devon, to study at University College Falmouth in Cornwall, from 2007 - 2010. As a young disabled student, moving away to live independently was a very daunting experience, but with the help from my Personal Assistants, I was able to start my journey toward an independent lifestyle.
My life is amazing. I have great support from my parents, being both my heroes and my best friends. I live in my fully adapted bungalow with my boyfriend and have my Personal Assistant on hand when I need help. Almost three years down the line and things aren't perfect with the house but we're getting there, fighting our way through an endless jungle of council workers, building regulations and benefit systems. At the age of 26 I already feel that I have achieved so much with my limited mobility and will continue to do as much as I can for myself and for others.
In May 2014 I am taking the chance of a lifetime, driving a 4000 mile round trip around Europe with my drive from wheelchair vehicle and electric wheelchair, visiting 15 countries in under 4 weeks. This is a feat for anyone, but being disabled gives me extra challenges in doing so too.
I'm extremely determined and ambitious in life and I feel I'm ready for my next challenge. I've been volunteering as support to teens and families with conditions similar to SMA, and have been unnerved by the cautiousness of many people. I hope to bring inspiration and enthusiasm to the talks I give, and so far I've been overwhelmed by the gratification in encouraging people to take that one step further, to fulfill their dreams of University, Independent living, and Driving a car.
From its preliminary stages of organising accessible accommodation to sorting travel insurance, I will be reporting and critiquing every aspect so that other disabled people can use it as a resource for planning their own trip. I'm not asking for any guidance with the trip from a disabled rep, I am just an ordinary girl booking her holiday.
Having a physical disability and using a number of mobility aids such as electric wheelchairs and mobile hoists can often put a strain on holidays abroad, but this entire trip is to demonstrate how easy it can be with forward planning and the ambition to achieve. This combination is all you need to live an independent lifestyle, whether you're able bodied or have any form of ailment.
In the past, we've taken my electric wheelchair abroad and it's been damaged by the airline crew, so I've become quite apprehensive about taking it on planes even though I've been thorough in explaining how vitally precious the chair is to me, and removing certain pieces as carry on hand luggage. I think I've been unlucky in these cases, as I know many other wheelchair users who have had perfect service from both massively international airlines and the budget ones too.
My boyfriend and I at the point in life together where we want to explore and take holidays, but city breaks are proving to be far more difficult than we anticipated. With the upheaval of transferring from wheelchair to plane, wheelchair damage, and rushing around for 2 nights in a European city, only to return home as stressed as we went, we feel it just isn't worth the cost.
So we thought, let's do it all in one go! We can take all of my equipment in our own form of transport, and we know it'll work effectively and be safe. I'd like to see the world before it becomes too difficult for me to do so. Some days I get achy and I suffer with severe Osteoporosis too, so I want to push myself now whilst I'm still young and can take a bit of the rough side of travelling!
For now, you can follow our planning on the blog, and during our trip we'll be having a tracking device so our followers can watch us chase our dreams. We're raising money alongside this for the Jennifer Trust for Spinal Muscular Atrophy who give a great deal of support to young children and their families who have been diagnosed with the condition.
We'd love to hear your travel tips, words of advice and wisdom, so please get in touch!
https://www.facebook.com/oursmalladventure
http://oursmalladventure.blogspot.co.uk
http://www.justgiving.com/ourSMAlladventure