Let me start by saying …. Let’s celebrate International Day of People with a Disability. Lets make this world a more inclusive place for all those with a disability. Inclusion is important to our wellbeing. There are an awful lot of people in our communities with some form of disability suffering in silence because they are made to feel different.

My name is Tracey and I have FSHD – Facioscapulaohumeral Muscular Dystrophy.

Despite being considered one of the most common forms of muscular dystrophy in adults and children there are no treatments and no cure.

FSHD is commonly associated with progressive weakening of facial, shoulder and upper arm muscles. However, this explanation does little justice to a disease that can rob us of our ability to walk, talk, smile or even eat. The progression often comes in bursts with sudden deterioration followed by periods of no change. Living with FSHD means living with pain, fatigue and the social isolation that comes from being reliant on mobility aids.

I’ve spent over half my life in a wheelchair.  After a bad fall in 2012 it became permanent. I now use a powered wheelchair, which gives me a little independence. However when I travel, I use my manual wheelchair (no independence), its way easier to travel with BUT not so great on my body. I found this out whilst travelling nationally and internationally as an Australian Disabled Rifle Shooter. When I travel I have to leave all the good stuff at home. It’s impossible to take the necessary equipment from home on holidays. I just make do if at all possible. Or … hire it. By making do, I put extra stress on my body and find I lose strength quicker throughout the day and I have a lot more pain to put up with.

This brings me to my MISSION – It’s all about Accessibility and Inclusion …..

Like I said before, the past 5 years I’ve had my fair share of travelling around Australia and I’ve found booking an accessible room to suit my needs extremely difficult at times.

As anyone connected to a person with a disability can verify ….. “We all have different needs”.

My mission is …. yet I haven’t worked out just how. I’m going to need a little help with what I have planned.  I want to travel Australia reviewing and rating some of these so-called accessible rooms so that anyone in a wheelchair looking to travel can book a room with absolute certainty knowing that the room will suit their needs and hopefully make a change to how we (Wheelies) holiday with no added stresses.

I would also like to work with local disability equipment suppliers and the place of accommodation to have equipment made available to these rooms so that people like myself don’t have the added stress or expense of carrying our equipment with us or hiring the equipment when we arrive at our destination.

 

Accessibility and Inclusion

My own experience travelling with a team of wheelchair athletes has given me insight as to how we can go about fixing these problems with a few pieces of equipment provided with our room.

I need to do some research regarding prices, who to approach and how to make this work for us all. The ideal solution would be if we could book the equipment while booking a room that meets our needs at NO EXTRA CHARGE …

This is not is not acceptable ….

Our Carer is as important to us as the equipment we use. They need a comfortable bed and a good night rest … NOT a trundle-bed . A disable room should come with 2 beds or a bed that can be split into 2 beds.

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When I’m in Adelaide I stay at a beautiful place that has 2 disable rooms available. The first room is the bigger room with a great accessible bathroom, an electric high/low single bed, a double bed, a hoist, a shower/ toilet commode and a wheelie walker on request. Oh …. and a mirror in the bathroom that I can use. The second available room has an accessible bathroom and comes with a Queen size bed only.

The Hotel I use when in Sydney has 6 wheelchair accessible rooms available. The bathroom is user-friendly with the exception of the mirror which is way too high and not user friendly …. how does a girl do her hair and make-up without a mirror ??? The room has 2 Queen size beds that are pure luxury.  If you require the bed to be off the ground to fit a hoist under, they are only too happy to accommodate, they’ll even move the bed around to suit for transfers.

The Ibis in Adelaide has nice rooms, bathroom user-friendly, they will split the King size bed in two to accommodate you and your Carer. The room itself is rather small, I can see it being a problem for anyone who uses equipment to transfer and the bed is not off the ground enough to suit an under bed hoist.

MY IDEA OF A PERFECT ROOM

• Super great bathroom
• Bathroom mirror that’s user-friendly … necessary for hair and make-up
• low pile carpet, easy to wheel on
• wider door way a plus
• 2 beds in the room – not trundle beds for the Carer
• equipment made available on request at no extra cost
• adjustable bed height
• room to move
• great view …. a bonus

I would love your feedback on what YOU think would make a great getaway that’s accessible for you and or a family member with mobility requirements.

INTERNATIONAL DAY OF PEOPLE WITH A DISABILITY FUNDRAISER – that I’m holding http://www.facebook.com/events/1923741157842939/

Facebook – fb.me/lifesjourneyonwheels

Messages –  m.me/lifesjourneyonwheels

I have another Facebook Page – What is FSHD? Awareness and Fundraising Page. The condition I was born with.

FACEBOOK –fb.me/whatisFSHD

MESSAGES – m.me/whatisFSHD

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