Unforced error: MS and the Australian Open
Most of us have read about “the note” – and a lot of us who live with MS are all too familiar with the experience of the recipient who needed a bit of special consideration (access to a parking spot close to the shopping center entrance, to which she was entitled) but who had no option but to park in the only “disabled” parking space that was available. The one with extra room to allow a wheelchair user space to get in and out of their vehicle. It’s easy to understand how someone for whom that extra room is essential might feel a sense of ownership towards that wider space – just as many of us sympathize completely with the lady with MS whose precious day out would have been made impossible if she’d been forced to negotiate a long path from her car to her destination. Why does our modern world - despite all the political correctness surrounding making life “accessible” – do such a poor job or recognizing the different types of consideration needed by people with different types of disability? If we don’t fit the caricature of the stick figure in a stick wheelchair on the sign, asking for any kind of assistance all too often leads to either disappointment or abuse.
I’ve been thinking a lot recently about concepts of disability, capability, accessibility, justice and more. I was planning to write a blog post based on my thoughts, when a friend shared with me a piece she wrote recently after experiencing attending a major sporting event with her partner, who has MS. After reading her moving words I decided the job was done! Below, with her permission, is a better exploration than I could ever have come up with of disability and access. Enjoy!
Unforced Error: Navigating the Australian Open with Multiple Sclerosis
Rain. Parking. Crowd. Knee lock. Foot drag. Fatigue. Stress. Spasm. Frustration.
It’s Sunday 24th January. You’re at the Australian Open. You must drive here instead of taking the train because you know your bladder could provoke at any moment. An accident on public transport would be embarrassing, as you’re an adult. You love tennis. You love watching sport. But you know you’re not coming back next year.
You have Multiple Sclerosis.
As you limp up Hisense arena, your shuffle turns to a hobble. It’s 11.25am and Tsonga is about to battle it out with Nishikori. The match is minutes away. You feel the burn of the attendant’s stare. “You must be seated!” their look says. The arena has no handrails and at this stage there are only seats at the top of the stand available. The stand becomes Everest. You start to panic and think about that toilet stop which could happen at any moment. You pause. People rush past. The players have finished warm up. People shoot you a sideways glance. They think your swagger means you’re drunk. You’ve peaked too early and it’s not even midday. You see their thought bubble say “what’s wrong with that guy?”
At this moment, it would be easier if you were in a wheelchair. The public casts pity toward the wheelchair, but right now, you’d succumb and trade your dignity for a seat on wheels at the bottom of the arena, far away from stairs. Your MS was diagnosed 10 years ago and you hide the symptoms. You pretend your mobility issue is due to an old rock climbing injury. Instead of explaining your condition, you take annual leave one day a month - every month – to have an infusion of life-saving Tysabri at the Monash hospital.
You look at your future wife patiently waiting at the top of the stand. She feels she failed: there weren’t two seats at the bottom of the stairs for her to save for you. She looks helplessly at you. She half smiles, remains upbeat, changes the subject to a history of Tsonga’s form. She offers to take your backpack to allow you to balance. You refuse. You want to do this yourself. Capability is all in the mind. You see her thought bubble say “Please apply for a disabled parking sticker. You deserve this. We need this”. She hides her upset. She knows she will come to the tennis by herself next year. You look away. You need to concentrate only on these stairs.
You’re not disabled – are you? Your MS means you have permanent, ongoing, degenerative mobility and cognitive issues. Technically, limitations on access is the disability. At this stage, your illness falls somewhere between ‘looking drunk’ and ‘being in a wheelchair’. You resist a walking aid. You worry your work colleagues will think your ability to do your job will be compromised by your illness if they know what’s wrong. You’re in senior management. We live in the 21st century but humans have an inherent fear of illness and that harks back to the cave man era.
You find your seat, it’s an achievement. You sit down and sigh as if it’s been a long day. It’s only 11.30am. Accessing the arena all day is going to be stressful. You’ll miss vital game points because of urgent toilet stops. The queues, the scramble for the seat, the looks: it’s all written into your day. It would have been easier to watch on TV. Your MS is exacerbated by stress and manifests as severe fatigue. You think about the 21st century again. There’s a push of inclusion and diversity – buzz words of our contemporary culture. You’re a fighter and your game is not to complain, but you think “How is this space welcoming for those with a mobility restriction?” In your mind, there’s an absence of access for those with mild - moderate physical or sensory disabilities.
You try not to think about next year, next week, even the next hour with MS. But your fiancé thinks about the future. Your relationship is centered around the thrill and drama of sport. You live in Australia’s sporting capital – Melbourne. She loves cricket, tennis, AFL, rugby, even world series darts! Sport is a talking point for you both and spectatorship is an activity which equates to quality time sent together as a couple. She talks about taking your future child to sporting matches as a family.
She observes the disability seating at this major arena. She notices it’s a row of unbolted seating at the four entrances of the stadium. She opens a web browser on her phone and types, ‘Australian Open. Disability. Access’. The Accessibility and Special Needs page reads that accessibility seating is “subject to availability” and “cannot be reserved”, meaning first come, first served. Surely this policy isn’t welcoming to the disabled community? Nothing in life is handed to you, but if you register as disabled and purchase disabled ticketing, you need to be guaranteed a seat, no fuss, with no sideways glances. You’d hate to compete for a spot while another disabled person can’t watch Nadal battle out with Djokovic in a five-set thriller. Imagine taking that away from someone! Worse, you’d hate to publically register as disabled and not have a guaranteed viewing position because another disabled person arrived earlier. In reality, you will probably get a seat, but if you don’t, how is that bad luck? This means you are at a disadvantage because of your disability. It’s 2016 and the booking system can’t even guarantee you your human right. You suspect Tennis Australia uses vague language on their website to ensure they are not liable for your disadvantage. You look around. Is the spectator group only white, English-speaking, and abled bodied?
Maybe it will be easier next year not to come at all. But then, you think about your future child not seeing a beautiful Federer slice backhand winner with his father by his side. You think about how special it is to share glorious moments with those you love, such as Lleyton Hewitt being clapped off the court as a champion. You think about the thrill and adrenaline-rush of a five-set grueling match that sees victory grabbed last moment by an underdog player. You want to explain to your future child how a player must fight, sustain, dig deep and focus to win. You know the rules of tennis apply to the rules of a life with MS.
You know something needs to change.
There’s really nothing to add to my friend’s heart-wrenching and thought-provoking words! But there are two more things I need to say.
1. THANK YOU for allowing me to share your words with the world! And
2. THANK YOU from all of us who live with any form of disability for the wonderful, supportive partner that you are. I know the readers here will not be surprised to know that you are in active discussion with Tennis Australia about how the accessibility of their events can be improved – and I know this is not something you will give up on until improvements have been made.
Wishing you much enjoyment when you next go to a live match together!
The Unaffected One