To Be.

tobeornottobe

Toward the end of last year, just as my sorry self was beginning to think I was running out of anything important enough to offer the world, I received an email that heralded a big change.  It was from Kylie at the Be.Accessible organisation.  I’ve written about them before, here.  They do excellent work in New Zealand: working onsite to improve accessibility across the country, increasing employment prospects for graduates with accessibility issues, championing the thinking about accessibility and community with the big thinkers of the private sector and developing leaders for social change.

I had written a piece about my birthday shopping expedition.  It was an accessibility nightmare.  You might have seen that piece, it was called Gone Girl.  Well, Kylie read it and emailed me, inviting me to a meeting to discuss ‘synergies’.  I thought that maybe she wanted to talk to me about my writing, so I went prepared.  I took a copy of my stats from the blog and had prepared to answer questions of the commercial kind.  But Kylie and her colleague Iris, wanted to know about my philosophy.  My core beliefs.  My illness journey and why I write; they asked if I knew what my audience was and for the first time I had an objective measure of what those stats meant.  It was a turning point for me. Kylie asked if I had thought much about the future of my blog and the directions my writing might take. And she outlined the Be.Leadership program.  They invited me to apply.

I came home fizzing. My whole body was shaking with the effort of the meeting, the nervousness I had felt and then the excitement as a whole new possibility opened up for me.  It’s one of the things I have learned to love about having a life that has swerved so far from my original plans. It keeps surprising me!  I applied, and then, on Christmas Eve I received the message I had been hoping for.  I had been accepted into the program.  Every year, 20 people from the disability community are selected to undertake a year of inquiry, reflection and growth in the field of social leadership. We’ll be engaging with leaders from a range of industries and sectors.  We’ll be workshopping, discussing, thinking and growing as leaders ourselves.

One of the things I thought had passed me by when I got ill, was the opportunity to do further study.  I just didn’t know how I would manage to physically do all the things required to even begin.  How I would be able to manage a fixed schedule with an unpredictable illness?   But life seems to be smiling my way.  I will be studying, after all.  I’ll be studying with an organisation who are committed to accessibility, they are perfectly positioned to understand diversity. So it will be possible for me to make the accommodations I need, to do what I need to do. And I will be studying something I am passionate about:  how to help make our society one “where everyone can just BE.” (Minnie Baragwanath).  I’ll be representing the unique perspective of people suffering with invisible illness and disabilities.  I’ll be writing.  And if I continue to feel as I do now on pulse steroid therapy, I’ll be able to do it with so much more energy.

After years of pushing against a tide of impossibility, my own sea of troubles, there’s a ship on my horizon. Once upon a time Shakespeare penned the timeless question; “To be or not to be?”.   I smile, as I write the following words: ‘to Be.’ is my answer.  To be all that I can be.  The programme starts in March, I am gathering together my reading list and filling my head with all manner of anticipations! But before I get all carried away with it, I want to say thank you; because in all truth, this pathway has opened up for me because of this blog… and that wouldn’t exist without my readers. That’s YOU!  I have found that writing about the things that matter gives me purpose, knowing you care about these things too gives me hope.  Thank you for giving my words the chance to enter your space. Thank you for reading and encouraging and helping me through all of the difficulties.  Thank you for sharing with me a passion for growing a compassionate, understanding community for people with invisible illness and disability. Now, it’s time for us to celebrate something great.  The start of an exciting new learning journey.  I can’t wait to share it with you!

I’m off to Be.Leadership!

teddyrooseveltP.S The above quote was mentioned by Bear Grylls in his show, The Island, on the telly last night.  He was talking about great leadership.  It stuck with me because I think it is a vital part of leadership. How important it is to show people you care before you can hope to lead them.  It is my desire to be that kind of leader. I’ll be thinking about that while I prepare for my first ‘Be.Leadership’ task.  Watch this space!

To be or not to be?

Kia Kaha. Stand Tall.

Today is International Day of People with Disability.

It’s a day for celebrating difference, for acknowledging ability.  It’s a day for shouting out achievements from the rooftops.  What a brilliant group of people live in the category of ‘People with Disability’.  As I get to know more people in this new community of mine, I am staggered.  I wonder if you are aware too?  When was the last time you interacted with someone of differing ability?  Did you feel strange? Did you wonder about who they are?  Did you get beyond the difference to see the similarities?

I was walking through a group of parents at my son’s school the other morning.  I have only been walking with a cane this year, apart from it, my disability is largely invisible.  I have a neurological disorder that makes it difficult for me to stand for long.  Getting around is increasingly more challenging. I use the cane for balance and it’s built in seat as somewhere to perch when the dizziness overwhelms.

“MAKE WAY FOR THE DISABLED LADY!”   my son yells out, like a town crier.  I cringe.  I don’t like to be looked at, at the best of times.  I felt at once awkward and neon lit.
“Zed!” I admonished.
“What?!”  He looks at me, his eyes wide.  He grins.  
“But you ARE, Mum! I’m just getting them up to speed”.

I look at his face and think about how simple it all is when you are seven. How simple it really should stay.  I think about how adulthood and social stigma and self-consciousness and the media and social norms all teach us about what
“disability” is.

It’s time for a different conversation.  It’s time for me to join my son in getting people up to speed.  I spent last Saturday night at a function for the Be.Accessible Movement It’s the first function I have been to where I felt able to sit when I needed to, able to be real about how I was feeling without it dampening the mood in the slightest. There was room in that function hall for difference.  No questioning looks, no awkwardness.  I was not ‘other’ but, ‘another’. There were genuinely fantastic people to meet, fast connections; no barriers.  It was a revelation to me.  I wish that all of society could function this way.  And I believe it can.

If I can make a difference to you, if you can make a difference to someone else.  If making a difference is simply in noticing the sameness within difference, we’re on our way.

This beautiful verse crossed my path yesterday.  Perfect timing for this International Day of People with Disability.  (FYI:  the Kahikatea is a wide branching New Zealand native tree).

By Henry Melburn

E tu kahikatea
E whakapai ururoa
Awhi mai awhi atu
Tatou tatou e, tatou tatou e

Stand tall like the kahikatea
To brave the changes
Embrace one another
We are one together

Not vain the weakest, if their force(1)

I made this facebook cover this morning (feel free to use it for your facebook today).  I thought Homer’s words express what I am trying to say.  There may be differences in the ability of the “disabled”  that people consider to be weakness.   But there are strengths beyond belief. There is value and diversity and an untapped resource of brilliance in this community.  We need to start seeing all diverse groups within our society as part of the whole.  Let’s unite en force:

Screen Shot 2014-12-03 at 9.44.00 am

Celebrating difference and acknowledging ability and making it possible for everyone to just, be. 

Maybe? Not Yet

When is the right time to start using a wheelchair?

It’s something I have been contemplating a lot.  You don’t want to start depending on one too soon.  But then, should you increasingly limit what you can do simply for lack of one?  And what to do with the pride factor?

My mobility has been on the decrease. I can walk short distances, but even walking up to my daughter’s school, just around the block, is now too hard.  I use a cane most places I go.  It helps me a little with balance, gives me something to lean on when I feel weak and has a little fold out stool so I can sit when I need to.

Walking anywhere, with the cane, or without is exhausting for me. It takes the lion’s share of my energy. I can still drive, which I am grateful for.  It’s just that doing much of anything once I get to my destination is so hard.  I’ve been using the complimentary scooter at the mall for the last few months, it’s been a big help.  But when should I start thinking about my own wheels?

When I went to Adelaide last weekend, I organised a hire chair for the duration of my stay.  I didn’t want my limited mobility to stop Erica and I from getting out and enjoying the city. I also didn’t want her to have to push me around, I’m an independent sort of person, so I wanted to ‘drive’ myself.  Walk on Wheels didn’t have any scooters available, so they hired me an electric wheelchair.  I figured it would give me the perfect opportunity to try out using a chair for future reference.  It was vastly superior to a scooter in terms of manoeuvrability; turning on a dime. Somehow, because it is smaller than a scooter, it is less conspicuous too.  It cost me $25 a day to hire the chair, plus fully refundable deposit and a delivery charge. I had the larger “Maverick” electric chair, I’m a bit of a big bird. It was the perfect size for me.

Me with Maverick(3)

The Maverick and I got acquainted very quickly!  So easy to move around, steering is a doddle and the joystick style controls really are intuitive. I liked the little horn.  It wasn’t so loud it scared people but was enough of a beep to let them know someone was there if I needed to discreetly get their attention.  I took the chair for a spin down to the tram station.

Trams in Adelaide are perfectly set up for people in chairs.   The stations are all ramped, and once on the platform, you just wait on the little blue mobility park.  As the driver approaches, he waves to let you know that he’s spotted you.  Then he pulls the tram up, hops out of his seat and lowers the ramp (some trams have folding ramps and others have pull out ramps).  There is a spot in the tram for the chair and an accessible stop request button right next to your park. The driver asks where you are hopping off and returns to assist you off the tram when you reach your destination.

Victoria Park Tram Stop

During my stay, I took the tram to Glenelg (about forty minutes away), Black Forest, and to hop around the city centre. Because I could power down my chair while in the tram, I was able to save battery power too. The excellent tram system saved me and my chair a lot of energy!  I was really impressed with the warm and friendly staff on the Adelaide Metro Transport system.  I’m sure it isn’t policy, but every time I went to pay for a ticket I was waved away. So nice to be treated with such kindness when you are staying in a foreign city!  Whoever complained about Australians hasn’t visited Adelaide!

I encountered a few problems with accessibility along Jetty Road in Glenelg.  It’s a shopping street that leads to the famous jetty and is lined with gorgeous shops, at least half of which I couldn’t get into with the chair.  But Adelaide Central caters beautifully for people in chairs.  Almost all of the shops I went to in Rundle Mall were easy to navigate without damaging the furniture!

I felt liberated in that chair. I could go where I wanted to go without worrying that I would ‘crash’ mid outing and have to get horizontal in a hurry. I felt free to move at a pace that was more natural than my own snail’s pace.  I could relax and enjoy my surroundings more.  It was slightly strange to be short though!  I am six foot tall when I stand on my own two feet.  But it was so good to be able to MOVE distances for longer. I loved it.  Being in a chair is still taxing, so you still need to budget your energy, once you are used to how much it takes. But oh, not nearly as spoon bending as trying walk distances. It felt so good to feel part of things in a much more active way!  Now that’s ironic.

We have decided to wait and see what happens in the next wee while.  In spite of the huge difference in what I was able to do when I was in a chair and my happy experience of things in Adelaide… I am just not ready yet. Our big hope is that the steroid therapy and possible IVIG makes a difference in the area of muscle weakness and neuropathy.  If that happens, I might be able to be more mobile on these legs of mine and the whole need for wheels might diminish.  Here’s hoping!

If it doesn’t work and things continue to decline, we’ll just have to find some snazzy wheels for me to buzz around in.

If you have Dysautonomia, or another medical condition that requires you to use mobility aids, do you use a chair? What made you decide it was time?  How do you feel about it?  Does it change the way people relate to you?  So many questions…!

FREEDOM!(1)

Gone Girl. A Tale of Road Rage.

On a scooter.

Yesterday was my birthday…
I turned 28.  In hexadecimal “nibbles”.
(google it, hexadecimals are kinda cute).

Screen Shot 2014-09-26 at 8.29.40 am
But back to the story…
…my friend Flo came and picked me up and took me to the mall.  The scooter hire girl remembered me and I got the highly coveted Scooter Number One. It is zippier, better at stopping when you ask it to, and the side mirrors don’t flop down all over your handbag.  Score! I tootled around a few shops high on the joy of a birthday and time with Flo.  I tried not to be distressed that I couldn’t even get down the lingerie aisles in Farmers Department Store. I figured I didn’t really need a birthday bra. I smiled anyway at the shop girl near the fitting rooms in Esprit when she said it might be easier to shop online. It might.  But it isn’t as much fun as shopping with Flo. And why shouldn’t I enjoy a bit of retail therapy?  Then I dropped Flo off for her appointment at the makeup counter.  I should be, er… more into makeup… but the bookshop was just down one floor and it is an unfair competition! Hmmm… makeup, books, makeup, books. It’s really no competition between makeup and books.  A hole was burning in my pocket.  For my birthday I’d been given a cool hundy, and I was thinking about the delicious potential to drop it exclusively on BOOKS!  Squeee!

I scootered down there faster than you can say ‘tortoise’.   A few aeons later, I arrived.  Mobility scooters have a speed switch that ranges from slow (a tortoise icon) to fast (you guessed it, a hare)… but even at hare-speed, it takes a looong time to get anywhere.  In the front of the bookstore of choice, Whitcoulls, they have some displays of new releases.  My twitchy fingers were eager to pick up the first one I could see. I liked the title, ‘Gone Girl’.  But the angled display tables made it impossible for me to pull up alongside on my scooter. I did a sleek little (sixteen point!)  turn and tried to reverse in. I banged the corner of the table.  A Whitcoull’s employee looked across at me, arched her eyebrow and walked off in the opposite direction. I reached for the book. It was 5cm out of my grasp. There was no room to ease myself off the scooter and stand to give myself more reach. Had I had room, I’d have been able to do that. But it occurred to me in that moment, that many people in wheel chairs can’t stand to get to things out of reach; what would they do in this situation?  I looked around for the employee, hoping for some help.  She was gone, girl.

I was not going to be deterred.  A hundred to spend on books is one of the greatest gifts of all time. I wasn’t going to let a bookshop girl with her archy eyebrows get the better of me.  I gave my embarrassment a silent talking-to and manoeuvred out of the space.  At the back of the store, the wall is lined with authors from A-Z.  I wouldn’t have a spotlight on the newest, but I might find some gems. I set my course for the rear. Half way on the dial between tortoise speed and hare speed.  I was veritably hurtling, turtle-style. The aisles in Whitcoulls do fit a scooter if it is going straight down the middle. Sadly, turning is not optional.  People on mobility devices clearly shouldn’t want to browse in bookstores. There are artfully arranged stacks of merchandise on the floor at the corners of all of the aisles.  The Little Yellow Digger-gift-boxed-set display met Scooter Number One as I attempted to round the corner. Scooter, 1, Diggers, 0.  A mother in the same aisle helped me by picking them up (thank you anonymous mother).

I spent half an hour in Whitcoulls. I looked for help no less than fifteen times.  Help to reach down titles I couldn’t reach, help with the infernal aisle corner displays. Help finding the poetry section.  I saw three more staff members. All three saw me and changed direction. No one offered to help. The crickets chirped.  When your eyes are not at the height of standing people, it is quite hard to get eye contact.  When you are down that low, even a wave can be lost behind a bookshelf. My hundred dollars hid deeper into my pocket. No party for it, today.

I lost my desire to purchase books from that store. I threw the scooter into reverse.  It has a really high pitched reversing beep.  It’s an incredibly annoying sound. I left it in reverse long enough for archy eyebrows girl to give me one last look. I accelerated past one last corner display.  I may have *cough* inadvertently disturbed its symmetry. I left the store.  In my imagination I looked a bit like a speedy hare, leaving a cloud of dust in my wake.  In truth, it was a less dramatic exit.  Think, slo-mo.  But the expression on my face remained steely resolute.  I patted my pocket. That’s a hundred bucks you don’t get today, Whitcoulls.  And then, I was a gone girl, too.

So my post about my birthday books is postponed.  …maybe there is a bookstore out there who wants my custom, even if I am not walking on two feet.

________________________________________________________________________________
PS:
I sent the people at Whitcoulls a link to my post as soon as it went up.  Very quickly Diane got back to me.  I am very grateful for such a timely response and so glad that the store will look into ways to improve customer service for people on mobility devices.  Thank you, Whitcoulls.
________________________________________________________________________________

This is what she wrote:
Screen Shot 2014-09-26 at 4.54.42 pmThanks for touching base and sharing your in store experience with us. It is disappointing that we have not been able to deliver the customer experience you, and every customer, deserves. There is nothing better than browsing books especially in the excitement of birthday present shopping. I will be passing this information onto our Store Manager to ensure they can look into this situation and how they can use this to improve their customer service.

In the meantime, I would love to extend a birthday present to you from Whitcoulls. If you are still interested in the Gone Girl Book, I would love to send you a copy along with a $20 Whitcoulls Gift Card that may enhance your birthday spending money. If you can send us your courier address and we will arrange to get this out to you.

Kindest regards,

Diane