A Wheely Good Night at the Sydney Opera House.

On Monday night, I not only watched our daughter perform at the Sydney Opera House, it was the first time I’ve gone out as a disabled person in a wheelchair and I can’t tell you how encouraged I feel by the experience. It truly opened doors for me, making it so much easier to relax, have a great night out and do what I was there for. That is, to hear my daughter play her violin without any unexpected medical nightmares… even if I couldn’t see her!

As a person with limited mobility, if all goes well, I can get around okay and usually use a walking stick in unfamiliar and crowded environments. I have what’s known as “an invisibility”, meaning that most of the time, you can’t see anything’s going on. However, these symptoms fluctuate dramatically so it can be hard to predict how I’ll be at a given point in time. Indeed, I was simply walking on grass when I broke my foot. Knowing that “being the hero” can have serious consequences, I’m understandably cautious about participating in seemingly everyday activities…such as getting to the Sydney Opera House. As such, I often end up staying home.

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However, there was no way I was going to miss our daughter playing her violin at the Sydney Opera House. No way on this earth!

However, if you have ever marvelled at the Sydney Opera House, you’ll note those stunning white sails are perched on top of a huge mountain of stairs. Of course, architecturally speaking, the effect is very dramatic.They’re also a photographer’s dream. I’ve seen intense portraits of lone performers sitting on those stairs with that same sense of abandonment you’d recall from Princess Diana’s portrait taken at the Taj Mahal.

As striking as these stairs might be, for anyone with mobility, health issues, or even a lack of fitness, those stairs are insurmountable. Although I can walk, I’d need an oxygen tank, not to mention a Sherpa, to help me get to the top. Even if I did miraculously make it to the summit, I’d be off in an ambulance and straight to the ER.

Opera House Steps

The Stairs…the dark side of getting to the Sydney opera House. A selfie on a good day.

Yet, while I’m prone to catastrophising, I knew I didn’t have to get up those stairs. That’s because public venues must have disabled access…even if it can be difficult to locate. When I attended School Spectacular at the Sydney Entertainment Centre last year, I was told to take the stairs, even though I was standing there with my walking stick. This particular person seemingly thought I could sprout a pair of wings and magically fly to my seat. Naturally, this meant that instead of having a good experience, I found myself defending accessibility rights when I wasn’t there as an activist. I was there to watch my daughter perform. Thankfully, someone else was more helpful.

After that, it’s hardly surprising that I want to sing my praises of Sydney Opera House staff right across the rooftops when everything went so well. We had VIP treatment all the way, and even the road lit up to greet us. What more could I ask?

I didn’t think about all of this when I booked myself in for a wheelchair seat. I always need an aisle seat and easy access in and out but get by with my walking stick and an accessible seat. However, these had sold out. The box office suggested this wheelchair spot, saying the Opera House could provide a wheelchair. I wasn’t entirely comfortable that I warranted a wheelchair. While I know people who use wheelchairs and can walk and how it enables them to do more, I’d never tried it out before. If I wasn’t doing well, I stayed home.

So, our trip to the Opera House, would also give us the opportunity to test out how a wheelchair went in public situations without having to BYO.

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Driving in to park at the Sydney Opera House

Our experience began with booking an accessible parking spot at the Opera House. It wasn’t free but it meant we could park right out the front with very little walking required. What it also meant was that we received the VIP treatment. We drove along Macquarie Street to the security gate, where the road was blocked off by a row of very sturdy metal bollards. As you could imagine, security is very tight. No more of this “G’day mate, it’s Fred” business. We had to show my disabled parking permit and my receipt to get through the gate. Then, like magic, the bollards electronically sunk into the ground and a row of recessed lights turned on. This was our road to the Opera House. By now, I was in my virtual limo pulling out the royal wave. It’s about time somebody treated mobility challenged people as VIPs, instead of outcasts!

After detouring for dinner, we returned to pick up the wheelchair and begin the journey to find our seats. The performance was in the Main Concert Hall and side-wheeling a gazillion stairs, we were personally escorted by staff along corridors, though multiple lifts via the bathroom. Once we’d finally reached our seats, we were greeted by a staff member asking: “You’re Rowena?”

Every single member of staff was courteous, friendly and respectful. I can’t tell you how that made me feel. It’s warmed my heart right to the core…a night we will never forget. Not just because our daughter was playing her violin at the Sydney Opera House, but because we were given the touch of human kindness, acceptance and understanding without it being a chore, something noble or even being “special”.

It just was.

Just like it ought to be!

What more could I ask for?!!

Concert Hall

Well, there was the small matter of needing someone to push my wheelchair. I don’t have the muscle strength to push my own chair. Not unsurprisingly, my husband was the wind beneath my wheels. Geoff’s Mum was in a wheelchair, so he has had experience. This is a good thing because wheelchairs can be notoriously difficult to operate, not unlike recalcitrant shopping trolleys with minds and travel destinations all of their own. Indeed, turning back the clock, Geoff’s mother fell out of the wheelchair when they went round a corner at Brisbane’s Expo88. I think he lost his licence after that and was put on a good behaviour bond!

Anyway, he got his licence back again last night…especially working with a difficult passenger who kept putting her foot on the wheels…not to mention bathroom stops up and down the lifts.

There was just one bit of explaining. We’d met a few other performing families during the day when I was walking round seemingly okay with the stick. Now, I was suddenly in a wheelchair. One lot had only seen us 5 minutes beforehand and thought I’d had an accident. They were all very understanding and had no dramas that I could walk and use a wheelchair all in one day.

Wouldn’t it be great if the rest of the world could be so understanding? Yet, you could say it was a Eureka Moment finally reaching that understanding myself after living with dermatomyositis for the last 10 years and struggling with the whole concept of using equipment!

I don’t know if there’s some quote about it being easy to change the whole world but more difficult to change yourself. If there isn’t, there should be and that’s where real change begins!

So perhaps you’ll be seeing more of me in wheels. Not because I’m getting worse but because I’m getting better.

Have you ever ventured out in a wheelchair or similar and how did it go? What sort of accessibility problems have you had or moments like mine where it all went well? Please share.

xx Rowena

 

34 thoughts on “A Wheely Good Night at the Sydney Opera House.

  1. derrickjknight

    Congratulations on not missing Missy; and on adapting to the wheelchair. My knees now make it difficult for me to negotiate crowds when I visit London, but I am reluctant to gravitate to a stick

  2. thecoffeebeanbrain

    Loved how you described it as an uplifting experience. I wish more areas and institutions would consider having the access of wheelchair for people needing disabilities, not just because of an obvious need but for those who are challenged in some ways. Never experienced being in that situation myself but let’s just say the stairs and I aren’t really friends. 🙂

  3. vanbytheriver

    What a wonderful experience for your entire family, Ro. So glad you shared it. I learned a lot about accessibility when my sister became wheelchair bound with MS. It was an eye-opener.
    I had a brief encounter with a broken foot, and on crutches, during the frenzied days of Christmas shopping. Folks were so sympathetic to my situation, and very kind, passing me ahead in line, getting items from shelves, etc.

  4. Midwestern Plant Girl

    What a great experience! I’m so glad that is was trouble free to go see your daughter’s performance.
    My mother was in a wheelchair, so yes, I do understand how hard it can be to go to places that will accommodate her.

  5. Rowena Post author

    It was worth using the wheelchair and just being able to relax. I did note that wheelchair should come with horns though. People seem to live in their own little bubbles and that’s without being attached to their phones texting or hunting Pokemon.

  6. Rowena Post author

    I’m sorry to hear your sister developed MS. Dermatomyositis is an auto-immune disease like MS so I sort of view them as colleagues. I had infusions of IVIG for 5 years and met quite a few people with MS there having their treatments. These are often brutal diseases but at the same time, you see such strength in people and resourcefulness. A close friend of mine has MND and she shares her experiences in detail and I really appreciate that so I can try to understand her situation better. I am lucky because there’s pretty good treatment available but I was a bit resistent so it’s been a battle. 2.5 years in remission seems like a dream.

  7. Rowena Post author

    I ditto the stairs…and footpaths.
    I have been stunned by how little disability gets mentioned in the media and there are all these other groups we hear about but we’re invisible. In Australia, I hear a lot about the rights of asylum seekers and the appauling conditions they live in in detention centres. While I don’t condone that, so many disabled people are living below the poverty line. I hear stories from my domestic assistant. Then, every time the politicians are trying to cut spending, disability is their first port of call. Not impressed!

  8. Rowena Post author

    I highly recommend a stick for a host of issues, including a broken heart. People are so nice when I have the stick and I get a seat on the train. It is worth considering the consequences of a fall. I’ve broken my foot and it gets worse. My Gran was a great one for using her stick to poke people and I can’t blame her. People shouldn’t be walking into you but they do and a stick can get you that bit of space. I know parolympic Gold medal sailor Liesl Tesch and she’s a teacher. She rides a bike to school and uses a wheelchair during the day and makes equipment work for her. It’s meant to extend your world, not define you.
    That said, it’s taken me 10 years to go out in a wheelchair so I know where you’re coming from!
    All the best!
    xx Rowena

  9. derrickjknight

    Thanks very much Rowena. When you are 6’3″ and look fit people ignore a stick – at least they did the single crutch I carried for protection after I had a hip replacement seven years ago. However, I will have to succumb soon.

  10. Rowena Post author

    Thanks, Suvi. I would’ve pushed myself but having the wheelchair made it a lot easier as I’d had to walk around earlier to get her to and from dinner and I could just flop.

  11. Rowena Post author

    I know what you mean. I am 5’10 and look pretty robust despite my muscle disease. When I’m really crook, they bump up the prednisone and I’m full of beans while being in medical strife. Very odd!

  12. thecoffeebeanbrain

    I feel for you with that. It’s been quite frustrating in my country too. Especially when I get to see how impressive some countries have gone with providing facilities for the disabled/challenged. We can only be advocates in our own ways.

  13. My Nomadic CrossFit Experience

    Before he passed away, I took my father out to watch rugby in Cardiff, in May this year. He had suddenly deteriorated and needed a chair. I was shocked at how invisible we both became to other folk. The staff in the Millenium Stadium were uterly amazing and cannot be faulted at all but the pedestrians in Cardiff were abominable. Stopping in front if us, walking IN TO us, ignoring our calls to just shift….it was hellish. I vowed since to always make a point for looking out for wheelchair-bound and mobility – restricted people wherever I go.

  14. Rowena Post author

    We had a few problems like that but our journey was pretty limited and we had Opera House staff to get us through the worst of it and they kept ploughing through.
    I have truly had my eyes opened about what it means to live with a disability in the last ten years and how you can encounter both the best and the worst of people. I’m usually reasonably mobile, although I sleep a fair bit during the day. I always help people and open doors for people who need it and they usually look very surprised. Shouldn’t be that way.

  15. Pingback: Weekend Coffee Share 27th August, 2016. | beyondtheflow

  16. wccunningham

    There is so much that so many of us take for granted. When my wife had a surgery a year and a half ago, she developed blood clots in her leg do to being immobile. This put her in a wheelchair for about six weeks. It was a life changing experience, as short as it was, for everyone in my house. Thankfully, she was semi-mobile for a few months after that and now good as new (so she says).

  17. New Journey

    I am so happy that you did the wheel chair for the performance, no need stressing yourself and pushing yourself over the edge and getting an injury…and how wonderful how well you were treated….I would make this my new way of travel at events, no need to take the risk of injury…we always used to put our mother in a wheel chair no matter where we were at….she had difficulty walking and was unruly most of the time so this helped us out, even though she hated it….great pictures….and wow there were a lot of kids…..kat

  18. Rowena Post author

    Thanks for the encouragement, Kat. The room was packed full of kids playing recorders and 250 strong string ensemble seemed small by comparison. It was an absolutely freezing, wet night and had to bribe the girl to get the photos. If I had to go to Starbucks, she had to be photographed!

  19. Rowena Post author

    Hi Linda,
    I just read some of your blog posts and it’s all very familiar to me. My only advice is to keep safe while this is all being worked out and not to under-estimate trouble from a fall. All the people offering miracle treatments annoyed me too. However, it took me awhile to appreciate that getting your general health to a good level will help. My rheumi has been clear with me that my lungs are the weakest link. I have had vaccinations for pneumonia and whooping cough and get the flu vacc every year. I also stay out of circulation as much as possible during Winter. My writing and photography as well as my family keep me going and many times that’s been by my fingernail but I’m still here. I hope that encourages you! Love & blessings,
    Rowena

  20. Rowena Post author

    Thanks so much, Monika. It was so special. At the same time, I’ve been wrecked since. Got to start revving myself up again but the engine’s not really wanting to turn over.

  21. Carol Balawyder

    What an uplifting and inspirational post, Rowena. I loved your description of the Opera House – how special it must have been to hear and see your daughter play there.

    You ask this question: Wouldn’t it be great if the rest of the world could be so understanding? It sure would be!

    This is the first time that I hear of dermatomyositis. I briefly looked it up on Google and found its symptoms to be somewhat similar to MS. I admire your courage! ❤

  22. Suraj Sehgal

    Thanks for sharing this experience! When I was on crutches for my ankle, I had an international flight after a week and had to be taken on a wheelchair throughout the airport. As someone who just got out of my teens and is extremely used to mobility, it was such a weird experience. I was treated very well and had easy access past all the long lines; however, there were also moments where I had to wait for almost an hour for a staff member to be able to come and wheel me around.

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