Reinventing Emma (22 page)

Chapter 36

Out There and Advocating

The forced break from work gave me the headspace to reflect on what I was doing and why. I was able to invest my energy, time and vision into areas that were meaningful to me. It was an amazing opportunity to write, carry out voluntary work and focus on developing my speaking business through my website at
www.emma-gee.com
. After thousands of presentations, I no longer needed to read from a set script and loved the creativity of designing my own keynote presentations and tailoring the content to each audience. With practice, lots of experience and reflecting on my own journey, I was more flexible and able to quickly improvise if necessary.

Em presents at an annual conference, 2015.

Over the years I have been given the opportunity to work with varying groups from school and university students to health professionals to service providers and fellow patients. In all my presentations, I focus on both resilience and client-centred practice. I have also begun co-presenting workshops with other experts and health professionals. With their assistance and input I can be so much more effective in my delivery. It also enables me to travel more and work with larger groups as the effort required is shared. There's no way this would be possible if I did it solo.

The fact that my marketing is 90 per cent word of mouth means that I don't need to spend a lot of time on it. The business has grown to include a virtual administration assistant, a videographer and a bookkeeper. Paddy has become a strong mentor and is now my business manager. I seek his expertise particularly in developing new content and improving my negotiation skills.

With this kind of work, travelling has become a much bigger part of my life. Travelling with a disability is tough but essential to ensure I can reach as wide a network as possible. The trials and tribulations of travelling have now become part and parcel of my every day, and through my personal experiences I'm better able to advocate for others.

When I fly, I try to pre-empt the likely obstacles I may face, and almost over-plan. I know my walking frame weighs 7.6 kilograms for the check-in staff. I know that I beep when I walk through the security point, and I have figured out how to gorilla walk between the head rests down the aircraft aisle. But still each trip is a huge challenge and a steep learning curve. More often than not, an airport run goes like this…

After helping me zip up my bulging case and driving me to the airport, my wonderful regular cab driver double-parks at the drop-off zone and places my luggage inside the terminal door. From that point no one offers to carry my bags. I don't want to miss my flight, so I try to move my luggage myself. I hook my suitcase's pulley device over my frame's left handle grip and drape my black suit-bag over the other, cape-like. I yank it along sideways – crab-like.
A disobedient dog on a lead, refusing to co-operate!
After two shuffles forward, the weight of my suitcase tips my frame and all of us go over backwards. I land
splat
on top of my case, sandwiched between my suit-bag and my frame. Everyone stares. Vulnerable. On display. Helpless.

I realise people are too focused on their own plans or simply ignoring my plight. I need to get up. After heaving a shaky sigh, I tilt my torso backwards and throw my body towards my frame, squeezing the brakes tightly with both hands and heaving my body upright.

After previous trips I'm not surprised when the lady at the check-in says, “You have to pay for excess luggage if you want to take that on the aircraft, M'am.” She points her chin at my frame. All airline policies specify that walking aids are excluded from the baggage weight, so rather than disagree with a staff member just doing their job, and miss my flight, I pay the charge. I often feel too tired to fight yet another small battle, but I'm aware that I need to advocate for others who don't have a voice. I make a mental note to write yet another letter to the airline to protest against this charge.

The next step, before a strong coffee, is passing the security metal detector. I line up and put my possessions in the blue trays provided. But I'm not fast enough and the queue banks up behind me.
I'm a stuck five-cent piece in a parking metre.

“Walk on through, M'am,” an airline staff member instructs loudly.

I don't move.

“Um … you need this to walk, right?” He taps my frame's handle-bars and then rocks it back and forth, teasing my independence.

Immediately I tighten my grip defensively and quickly reply, “Yes.”
It's not a fashion statement.

“How about I walk you through instead.” He glides my frame through with a long beep then returns, rolls up his sleeves and holds out his hairy forearms. With my frame out of sight, I feel compelled to cling on and we waltz through. Standing, star-shaped, I'm padded down by a female stranger.
She's checking for dangerous goods that I may be disguising with my disability.
I collect my bags and make my way to the lift down to the gates.

Alone inside the lift I begin to notice the aches in my left hip from my fall. Suddenly, with a thud, the metal box I'm travelling in jerks to a stop. I wait … But after a few minutes I realise it's not going anywhere and neither am I.
I'm stuck in a lift!

I press the ‘emergency' button.

“Hi, it's Jessica. How are you today?” a cheery voice answers.

Then before I can respond, she says, “Do you mind holding?” and again before I can say a word ‘call-waiting' music comes on.
Yep, in a lift. Yes, I've pressed an emergency button.
Then she doesn't come back. I press the button again and get the same spiel from a lady named Linda.

“What lift are you in, Dear?” she asks.

I bend down low to reach the speaker and talk loudly and slowly in the same demeaning way many strangers speak to me. “Melbourne Airport.”

“So Melbourne University?” she asks. I can hear her typing.

“No, Melbourne Airport,” I repeat even slower and louder.

Minutes pass … Male voices call instructions from above me and Linda's high-pitched voice squeaks other commands. The voices clash and morph into a cloud of confusion
. I don't understand anything anyone's saying.

Then the crackling speaker fades and there's silence.

“Is anyone there?” I shout, but I can't project and no one answers. I start to panic.
No water and it's stuffy in here
. I take my jacket off and remind myself of my business motto, “
It's not what happens to you, it's how you choose to deal with it.”

A perfect opportunity to practise what you preach, Em.

Suddenly the metal doors of the lift part.

“Are the doors opening?” a man above shouts.

They are. But, just like in the movies, all I see is a concrete wall and some cables.

“They're open but there's a wall,” I try to shout back.

“Are you OK?” another lady joins in from the speaker. Once again I'm not sure who's asking what.

“Are you still in the lift?” a man shouts.

I'm confused.
How does he think I could escape?

“Yes,” I say, probably too forcefully.

Once again, silence. I hear a knocking sound and then nothing. Then a few male voices. Fifteen minutes later, which feels like three hours, the doors are forced open. All I see are three men's work boots in the opening, level with my head. One male voice instructs me, “Climb on up.”

I just gaze down to my walking frame and after a short silence I see a guy's head peering down at me. Bewildered at who he is about to rescue he slowly says, “Umm … I'll come down and help you.” He levers me up and his two colleagues drag me onto the shiny white surface of the airport floor.

Space. Air. Noise. “Thank you,” I gasp.

After recovering from that adventure I board early with the ‘people with special needs' announcement and hike to my designated seat, which is at the far end of the aircraft. Despite clearly stating I get tired and can't walk too far, they seem to assume I'll need my stint of rehab. The flight attendant then puts on my seatbelt for me and takes me step by step through the safety instructions.

After I hear this all again with my fellow passengers, we take off. Sitting for a prolonged length of time causes my nerve pain to peak and I always feel the need to move. On longer flights I've even resorted to walking up and down the aisle or lying on my back and putting my legs up the aircraft's walls.

Later in the flight, the attendant crouches down next to me in the aisle and says, “We'll be exiting this aircraft via the tarmac, would you like the special lift down?”

I have travelled once in that dodgy, terrifying cherry-picker-like lift machine and immediately reply, “No thanks, I can do stairs.”

She nods.

We land. Once the seat-belt sign is off, my fellow passengers are on their digital devices and with the
click
of their belts, are released to resume life again.

I sit and watch them, my belt still fastened. I know from flights past that I'll depart with the staff and meet the cleaners on their way in.

“Sorry about the long wait, M'am. We had to wait for the special lift,” the same attendant says.

“But I didn't ask for the lift. I can do stairs. I'd prefer stairs.”

But the lift has been organised, as has a wheelchair. So I swallow my fear and frustration, plonk into the chair and take the dreaded lift.

Another airline staff member with giant earmuffs pushes the wheelchair across the tarmac. “Is someone meeting you?” he asks behind me.

“No, I'm travelling for work so I asked for assistance to the baggage claim and then onto the cab rank,” I say.

Suddenly my wheelchair stops. “So no one's meeting you?” he asks, clearly annoyed.

“Well I'm boarding the next flight, we're very understaffed today and there's no people mover so you'll have to wait 30 minutes or so,” he says in a hassled tone.

“Are you serious?” I ask.

No answer. He is gone.

I am left stranded in a dodgy non-self-propelling wheelchair facing a pole and a metal rubbish bin. I feel unheard, forgotten, demeaned and rejected.
A bit of rubbish that hadn't quite made the bin.
Others walk by, only stopping to dispose of their rubbish. Eventually a cleaner emptying the bin finds me. She volunteers to “do me a favour” (stressing that it's out of her hours and not in her job description) and escorts me to the baggage carousel. Vulnerable and desperate, I just nod and thank her.

Dumped at the carousel, I watch my suitcase, pink and lonely, revolving around and around on the black licorice-like conveyor belt. A stranger offers to lift it off for me. I thank my Good Samaritan and muster the energy to exit the terminal to the cab rank.

Arriving at my hotel exhausted, I want to double-check at reception that my room is definitely accessible. I had called earlier to request a ‘disabled room' just to be sure.

The receptionist says, “Well it's not a disabled room, but it's a semi-accessible one.”

I look at her, confused. “Sorry, what's the difference between the two?”

“Oh, it's accessible but I think um … well um, it has less rails,” she says, clearly not knowing.

So what disability would I need to have to warrant me being given a fully ‘disabled room'?
I actually suspect accessible rooms don't exist at this venue. More often than not, although claiming to meet regulations, disabled bathrooms are used as storerooms or are locked. Typically, the designated ‘accessible' room is far from safe and has rails randomly installed to attempt to meet the standards.

The hotel staff member leads me to my room, wheeling my suitcase and opening the door for me. Although it's modern and smoke-free, when I enter I see a massive staircase.

“Stairs!” I say dumbfounded.

She stands there with a big smile on her face. “Yes, M'am, we've upgraded you!”