Saturday 18 August 2018

Disability, Disney and Discussing Empathy- Don't Stop Thinking About Tomorrow

Hello! Today I will be doing something a little different as I will be hosting a guest post from another blogger! Don't Stop Thinking About Tomorrow is a brand new YA contemporary that focuses on empathy, so Walker Books came up with the brilliant idea of sharing each others personal stories on our blogs to try to encourage empathy between us.

This post is from Pippa (Life of Pippa) and focuses on how living with an invisible illness affects her day to day life. 

My name is Pippa, and I’m a lifestyle blogger from Yorkshire. I became chronically ill at the age of 15, and began to use mobility aids at the age of twenty. Today, I’d like to talk about invisible illness, empathy, and the place that really drove it home for me… Disneyland Paris.

Something I often consider is at what point an invisible illness becomes visible ‘enough’ to ‘earn’ the empathy of others. Why? Because despite using an extremely visible mobility aid, many non-disabled people are still inclined to question whether I actually look unwell enough to need a wheelchair. I’ve talked many a time about people’s perceptions of my invisible condition, and what it’s like to be an invisibly ill wheelchair user, however it was my recent experience at Disneyland Paris that was a particular eye-opener for me.

For those who don’t know, Disney operates a Green Access Card system: a majestic little piece of paper that allows people with specific conditions to jump to the front of ride queues, skip the lines for meet and greets, and even bag the best viewing spots for all the shows. However, with using such an awesome system came unwanted attention that really highlighted just how stigmatised invisible conditions still continue to be.

In Disneyland, you enter rides from the exit, so that all those poor people who’ve queued relentlessly for hours to get on their favourite rides have to watch you glide past and hop on and off the attraction before they’ve even edged forward an inch. This is where things got slightly uncomfortable. Each time I approached a ride, I knew that all eyes were on me as I calmly stood up from my wheelchair and carefully made my way to my seat on the attraction. Sometimes, the intense attention could simply be attributed to people’s curiosity or sheer boredom from waiting in line. Other times, you could detect the scorned looks from a distance: people wondering what was actually ‘wrong’ with this person who looked and walked exactly like them, and why they were getting this special treatment.

Each time I made this small journey, I couldn't help but wonder whether there was anything I could do to give this attentive audience just the slightest insight into the numerous hidden symptoms I experience on a daily basis. My friends and I often joke about how people might be more accepting if I dramatically face-planted out of my wheelchair onto the ground and proceeded to let them drag me across the floor from A to B, and whilst that is clearly something I’d never do (for one, I’ve seen what people throw on those floors when they think nobody is looking…), you can’t help but wonder whether people’s perceptions would change at an outright display of suffering.

At what point does a condition become visible ‘enough’ to meet the general public’s satisfaction? And why am I questioning how to make my illness more visible, when really I should be questioning why my condition has to be visible to warrant empathy from others?

To an extent, I can understand. Many of Disneyland Paris’ visitors are British, and if there’s one thing us Brits like, it’s a good orderly queue system. To have waited for such a long time and then witness somebody appearing out of nowhere, then seemingly abandoning the mobility aid that got them there in the first place? Before I got ill, who’s to say I wouldn’t have made assumptions too?

However, this is what I’d like them to know. Not only is my illness invisible, so is my condition management. My

holiday wasn’t spent waltzing between attractions from dawn until dusk. On a typical Disney day, I had a few hours outdoors, followed by solid bedrest, a heck of a lot of medication and usually extreme coercion from my carer before I could face venturing outside again. I live with constant chronic pain and fatigue; to have to queue for just one attraction, even in my wheelchair, would leave me suffering for the rest of the day. And if you made me choose between spending my diminishing energy waiting in a queue for a ride I might be too poorly to get on by the time I reached the front, or pacing myself and making sure I’m well enough for cuddles with Mickey Mouse, I’m sure it’s a no-brainer which one I’m going to choose. You might wish for my magical Access card, but trust me, you can have it if you take my chronic illness too. Maybe I don’t look ill ‘enough’ to satisfy your curiosity or avoid your assumptions, but that doesn’t make my illness experience any less valid.

In the future, I hope that Disney continue to develop their wonderful accessibility practices, that the general public’s awareness of and empathy towards chronic invisible conditions continues to increase, and perhaps most importantly, that I get to go on It’s A Small World some time again in the near future. That ride is seriously adorable.

If you’ve had similar experiences to me, I’d love to hear them. How do you think we can remove the prejudice surrounding invisible illness?

My Thoughts

I found it quite easy to empathise with Pippa, as although I don't have an invisible physical illness,I have been diagnosed with a mental illness. Like Pippa, people assume that just because I look fine that I am fine, but what they don't see is what's going on inside my head, the constant anxiety I experience from being out in public, and how difficult it is for me to do a simple task such as going up to a cashier to pay for something.

I wrote a post on my struggles with social anxiety which you can find over on Alice's blog, so be sure to check that out!

I'd like to say a big thank you to Pippa for sharing her story!

Don't Stop Thinking About Tomorrow is now available to purchase, and I will be sharing my thoughts on the book very soon!

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