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.
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.
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?
