If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Disney Made Me Question My Disability

Pippa_ScopePippa_Scope Posts: 4,907Administrator Scope community team
edited December 2017 in Guest blogs

Pippa is a recent graduate with multiple long-term conditions. She blogs about accessible theatre, lifestyle and fundraising at Life Of Pippa, and talks to us today about the ongoing prejudice surrounding invisible conditions.

Something I often consider is at what point an invisible illness becomes visible ‘enough’. 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, using their access card system for the first time, that was a particular eye-opener for me.

For those who don’t know, the Green Access Card is a majestic little piece of paper that allows people with specific conditions and impairments 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. Essentially, it’s like holding a Golden Ticket to Willy Wonka’s chocolate factory. However, with using such an awesome system came unwanted attention that really highlighted just how stigmatised invisible conditions still continue to be.

young adult female wheelchair user and friend posing for a picture with Daisy Duck in Disneyland Paris

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 pick up the raised eyebrows 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 be validated?

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 had to witness somebody appearing out of nowhere, then seemingly abandoning their 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 do the 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. 

Two young adult females stood up either side of Mickey Mouse holding his arms and pretending to kiss his cheeks

In the future, I hope that Disney continue to develop their wonderful accessibility practices, that the general public’s awareness and tolerance of 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?

Replies

  • Sam_ScopeSam_Scope Posts: 6,638Administrator Scope community team
    Great post Pippa :)
    Scope
    Senior online community officer
  • loopytloopyt Posts: 75Member Whisperer
    Hi Pippa, what a well written post. I am so pleased you were able to have the chance to experience Disney, even if for a short time it must have been magical. I have no idea how we can change the perception and end the prejudice other than to teach more respect from a young age. Maybe schools should encourage visits from people with different disabilties. You are able to express the issue so well maybe even a video message which could be played in schools giving an idea how disability is a daily challenge, physically, mentally and challenging from the point of view of the attitude of others?
    Hope you get to go again x
  • TopkittenTopkitten Posts: 887Member Chatterbox
    Really people should not need to be educated as invisible conditions have always been with us. I suppose though that mostly they were mostly 'visible' in the elderly. I suppose people expect to see old people that way and not the younger people who have more options now.

    Personally I used to love going to theme parks and going on the extreme rides but after my neck surgery I would be risking a broken neck if I did so. A couple os summers ago I did try a few rides at a nearby resort, carefully picking ones that wouldn't give me sideways pressure. However it didn't work out very well and I am condemned to not going on anything.

    Good for you for trying and enjoying it even if you did suffer for it. Pushing ourselves at times is good for us making us feel more 'normal'. I am sorry though it made you feel uncomfortable just for doing something you are completely entitled to do.

    TK
    I am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • loopytloopyt Posts: 75Member Whisperer
    Hi Topkitten, I hope you don't mind me asking and I understand if you do not wish to reply. Was your surgery on a cervical disc? 
  • TopkittenTopkitten Posts: 887Member Chatterbox
    Yes it was. I had C5/6 fused and I was told very firmly that it would never be as strong as before the operation and that fairground rides of any sort shouldn't be used. I now need C6/7 fused so for me the question is moot anyway. Something else from my past gone away.

    TK
    I am here to kick ass and chew bubblegum... and I am all out of bubblegum -- They Live 80 something cult film.
  • loopytloopyt Posts: 75Member Whisperer
    Thank you TK, going through it once is bad enough, you must have a good consultant. Hope it all goes well for you x
  • Pippa_ScopePippa_Scope Posts: 4,907Administrator Scope community team
    Thank you so much for your kind words, @loopyt and @topkitten. I hope today is a good one for you both!


Sign in or join us to comment.