Adult life does come with more responsibilities, independence and future planning regardless of ability. Finding employment or career opportunities does involve some travelling. Having a disability like Duchenne which requires complex care does make travelling more complicated but not impossible. Able-bodied people do not have as many issues to consider when travelling in comparison to disabled people who face barriers before they can even enjoy themselves.
September was a month where I was regularly on the road. On 20th September, I travelled to the Olympic Park in London to attend Channel 4’s ‘No Go Britain’ discussion & then on the 23rd I visited Birmingham to meet colleagues from the wonderful Limitless Travel. They aim to make travel/holidays as simple as possible for disabled people without all the barriers. I’m glad to start my journey with the CEO Angus Drummond & Editor Claudia Knight from Limitless Travel.
I always travel in my adapted VW Caddy from my Motability benefit. It has a manual ramp, two sliding side doors and a wheelchair lock-in system designed for my wheelchair. In the past my PA or Mum would have to manually clamp/unclamp me using 4 straps, it was such a hassle to do especially in the rain. The car has 4 seats + me but the left seat has been removed for space.
My mentality is to optimise my actions to create energy efficient or effortless outputs.
The care that I require throughout the day is not optional but essential for me to function 100% so I need to incorporate it during the journey. As a disabled person I feel it’s important to be organised because managing DMD is a huge commitment.
The List of equipment or care that I require on a day-to-day basis or whilst travelling on a long-distance journey:
Pain Medication – on a 4 hourly basis and administered via my gastrostomy (stomach tube) due to having weak swallowing muscles meaning I can easily choke.
Dedicated Medicine Bag – usually prepared the night before with pre-mixed doses of medication, 2 syringes and tissues to prevent my clothes from getting dirty.
Feed + Bag – I have a feed that provides me with all my required nutrients through my gastrostomy. It usually lasts for about 10+ hours. The feed pump is quite loud so when I leave the house I hide it in the bag attached to the back of my wheelchair.
CPAP Ventilator + Mask – I need to use my ventilator in the car because the chest strap I need to wear restricts my breathing. The added benefit is the ability to store energy for networking, speaking or enjoyment. It is a very heavy machine so I carry it around at the back of my wheelchair.
Inverter – allows the car to charge my ventilator which has a 4 hour battery life.
Conveen – a urine bag which is strapped to my leg underneath my trousers which holds 1000ml. The convene is a really important gadget for ease of travel, giving me control of when to use or empty it even in the vehicle.
Assistive Technology for my iPhone 5 + Arm – in the car I use a Jelly Bean Switch (the red button on my lap) to control my iPhone through a Hook+ switch Interface. The charity ReMap built the arm gadget that allows my mobile to be positioned at eye-level.
When I arrive at my destination in London I have to go through the nightmare of finding disabled parking spaces but I have found a few spots, the good news is parking for 4 hours (opposed to the usual 3hours) which is enough time for Parliamentary meetings.
However, there are some problems that I have to contend with after travelling long distances. I am always exhausted the next day, neck/back pain due to the bumps on the journey & needing a quiet day with limited talking. This is one of the reasons that I don’t attend every Muscular Dystrophy UK event, regional meeting or my other interests with Limitless Travel or the Muscle Owl.
It is a balancing act between energy versus impact? Majority of the time I have organized my day into chunks that incorporate rest as well as using my experiences to help improve accessibility and promote disability awareness.
My next wish would be to book an overseas holiday through Limitless Travel, it has been 11 years since my last holiday in Portugal.
Finally, thank you goes out to my Mum who always encourages and supports the dreams & goals I have in life.
Uncanny Vivek 