Hi! My name Elsie and if you don't want to hear an intro please skip to a timestamp
below! Otherwise, hey everyone! For those of you
who don't follow me on other social media, I am a third year undergraduate at Harvard
University who studies sociology with a focus on Disability Studies. I myself am disabled
slash chronically ill, I have Cystic Fibrosis alongside other disabling conditions. I fluctuate
between having a visible and invisible disability based on whether or not I am using my wheelchair
as a mobility aid or using other indicators like my cannula. It's no secret that we
live in an ableist world that sees disability and illness as something inherently repugnant,
and that the more in which you visibly embody your condition the more you might be judged
for it. Like, if I'm out in public in crutches, or in my wheelchair, or even wearing a surgical
face mask or using oxygen people are avoidant. I've had people do everything from pat me
on the head, refuse to touch me or go near me, mock me or treat me as though I am not
the thinking, feeling, young woman that I am.
There is a social resistance to seeing illness and disability as normal and acceptable forms
of human variation, that our existence is not attractive or valid unless we view our
condition as lesser than that of an able-bodied person. And that because of this we somehow
become less attractive or less deserving of love and companionship.
I want to echo the blogger crippledscholar's sentiments on this, that quote : "I want to
see disabled people culturally framed as beautiful and I want this to happen without a flurry
of think pieces on how progressive it is. Those think pieces are evidence of how strange
it still is how people still feel the need to applaud it. The change will come when disabled
people can be portrayed as beautiful and sexual and the response is to agree and admire that
beauty without qualification. I don't want any more disabled people growing up to be
told that no one will want them just because they are disabled." Endquote.
We should be seen as beautiful without our illness or disability serving as a caveat
to our beauty, and I try to use fashion as a way to break down the barrier that illness
and disability creates. In my own experience, I seek to not necessarily conform to an able-bodied
ideal of personal expression, but rather adapt my fashion and art for my own bodily needs.
Because of this I have long had a passion for making videos, and posts such as this
which showcase the ways I use fashion in hopes that it will inspire others to use their own
creativity to change the ways they showcase their illness or disability.
I really want to stress that my intent for this is not to tell people that you have to
in conform or change your appearance in order to be "socially acceptable" as someone
who is disabled and/or chronically ill. Rather, I hope to explain the ways in which I and
others have used fashion as an art form to embrace our chronic illnesses and normalize
them. I've divided this video into types of fashion
concerns and medical devices or aids because plenty of issues such as bloating and PICC
lines are common among multiple chronic illnesses. I have time stamps in the description below
if you'd like to hear about specific things, so without further ado let's get into it!
I already did a video dedicated entirely to wheelchair fashion, but I do feel like I've
gathered a couple more tips during my time at college in a city with terrible cobblestone
roads and also just by being a college student! First, short sleeves, ¾ sleeves, or long
sleeves with elasticized ends like these are your friends. As much as I love long, flowy,
or poofy sleeves, they are super inconvenient while in a chair! I find that they get in
my way when I'm trying to push or they get really dirty from the wheels. Now, I am only
a part-time chair user so I save cumbersome sleeves for when I'm using forearm crutches
or walking without an aid. Second, and probably the most useful, is choosing
a backpack. Finding out which backpack works best for you and your chair is honestly a
bit of trial and error. I have gone through about 4 backpacks, but so far I personally
find that I really enjoy my Fjallraven backpack. It's quite difficult to hold onto things
in a chair, and if you don't have side pouches, the easiest way to hold things is with a backpack.
Having separate compartments for your laptop and other stuff as well as side pockets are
super convenient. Backpacks can be a really fun fashion statement, but they also need
to be practical, you want to make sure you have a bag that can safely store your belongings,
and which can withstand the elements. If the backpack that is the most functional for you
isn't very cute, keychains, pins, and iron-on patches are always your friends.
I used to use forearm crutches or a single cane consistently for about 4 years. I've
transitioned out of them and use mainly my wheelchair for my weakness, or vertigo but
I still do have tips on how I fashioned my canes and crutches! Firstly, I would recommend
the brand of forearm crutches that I have always used: WalkEasy, which I've linked
below. I really like them because their crutches come in a TON of colours, including glitter!
And suit a range of heights and sizes. They're a good price and a great place to start in
terms of customization because you can start off with a base colour that you really like
and will compliment your outfits. As for single canes, I never used a consistent
brand and usually ended up getting some pretty meh black and grey canes. So what I used to
do is take glitter or decorated washi tape and run it from the tip of the cane to the
handle in order to give it some pizazz, ahah. If you feel like getting a specifically cute
cane, etsy is a good resource to find some cool woodcarved and custom blinged out canes!
I've linked a few I found cool below, just make sure that if you purchase a cane which
is not adjustable that you check with an occupational therapist or measure for yourself what height
the cane should be in order to best suit your needs.
----------------------------------------------------------- If anyone has seen my old DIY cannula video,
you know I like to jazz my cannula up. In college it's tougher to get access to glue
guns and stuff, so my quick solution is to use ribbons and chokers. I will either choose
a nice ribbon, which matches my outfit, and tie it either just around the cannula when
it's a high neck shirt. Or I will tie it around both the cannula and my neck, and in
case if I don't want to use a ribbon I can always use a choker. Fabric or lace ones tend
to work best for this. If you need to wear a surgical mask to avoid illness either with
or without cannula, I suggest buying large packs of disposable surgical masks as they
are much more protective than reusable cotton masks. I personally use these cute Disney
masks, not only for the aesthetic, but also because I'm very small and only pediatric
masks fit me!
When it comes to carrying Oxygen, I currently only use a max of 2 litres per minute so I
just own a smaller portable O2 converter which comes with a rolling carrier. O2 converters
and tanks are things I think you can have a lot of fun with! Right now on mine I just
decorated it with some glow-in-the dark stars pressed on with sticky tack, and a cute pink
ribbon because that's what I have here at college! But I plan to hopefully do something
more fun with it in the future. Some ideas I have are:
1) using adhesive googly eyes and construction paper to give my O2 a cute little face
2) Cutting out magazine and comic book strips to make a collage using modge podge painted
overtop 3) Getting rhinestones and a glue gun or white
glue to completely bedazzle it, or 4) Getting a bunch of fake flowers, including
pink roses of course, and cutting off the plastic stems, pulling off the fake leaves,
then taking a glue gun and pressing a bunch of flower heads close together to make a pretty
floral collage. This is the idea I'm currently leaning towards right now but if you have
a preference or would like me to try an idea of yours then please comment below!
Bloating is a common problem for a variety chronically ill people, to the point where
you might get people asking you if you're pregnant. Over the years, I've found three
main methods of hiding bloating as much as possible. The first thing I wear is some form
of high-waisted pant. High waisted pants draw the eye to your natural waist and don't
cling to your lower stomach as much. I like to go for looser fitting pants like culottes,
or high-waisted pants with an accent like a bow because they tend to be the most flattering.
Now another type of clothing I reach for to deal with bloating are dresses with a defined
waist either that falls at my natural waistline, or just below my breasts. Shift dresses such
as these don't cling as much to your body and don't add emphasis to your bloating.
Pairing dresses like these with a blazer or a cardigan serves to further camouflage any
bloating you may experience. The final thing that I find tends to help
cover my bloated stomach is skirts! Particularly maxi skirts or pencil skirts that reach my
waist. They serve the same role as high-waisted pants do, and I feel that maxi skirts are
especially comfortable to wear when in a wheelchair, or if you for any reason need to wear an adult
diaper, a maxi skirt will cover that well. I find that for incontinence diapers in general
that looser fitting skirts, and culottes are the best ways to hide that lovely diaper outline.
The most common problems that people with chronic illness have when it comes to bras
are that they're either 1) Too tight and uncomfortable which leads
to pain or difficulty breathing and/or 2) They're difficult to put on and lead
to muscle or joint pain My solutions for these problems are ones that
I personally use. Since I have a lung disease, there are many times when wearing a bra is
restrictive to my breathing. To counteract this I either
a) wear a bra which has a lace band so it is more stretchy and which is in my "sister
size" meaning that it is one band size bigger and one cup size smaller than my true size
but still fits pretty well. My true size is 30E but I often wear a 32DD so that I can
breathe better. OR b) On bad lung days, I'll wear a lace bralette
with no clasps and minimal or no underwire. This is the option I turn to when I'm having
a worse lung day but still need to go somewhere, since I have somewhat larger breasts that
need support. Bralettes such as this Triumph spotlight bralette which is just my personal
favourites I'm unfortunately sponsored by nobody, is good because it has a little support
due to the way it's sewn but also can be put on like a shirt and is easy to breathe
in. To deal with bras that are hard to put on,
I would suggest using a bralette like the one I just mentioned which can be put on like
a tank top, though possibly one with more support, or a bra which claps in the front
either with a Velcro or metal clasp. The amazon links I have below are for bras which I find
to be the best suited to dealing with chronic illness bra problems, while at the same time
not being ugly! Cute bras have the power to make you feel good on some of your worst days
and you shouldn't have to compromise style for comfort or accessibility.
PICC lines are often unavoidable if you have a chronic illness, and whether you have a
PICC line which is a catheter in your arm, or a catheter inserted into your chest as
a CCV, you generally keep it covered not only to keep it in place but also because you may
not want strangers to stare at it. So a pretty easy way to deal with this is to get yourself
a fun PICC line cover armband that's decorative and can be worn with sort sleeves or underneath
a looser long sleeve shirt that fits over your line.
Since CCV's are on your chest, one of the easiest ways to disguise your catheter is
wear a shirt with a loose round or v-neck in order to have easy access to your picc,
and then use a scarf over top to hide the catheter most of the time. My favourite way
of tying a scarf is to fold it in half, put your hand through the loop you made, and pull
the other end through the loop! If you follow more stringent modesty rules or use a hijab,
try wearing a long head-scarf that extends to the chest, or buying a shawl to wrap around
your shoulders and chest. ----------------------------------------------
If you have a Ostomy bag, it's generally not going to be visible unless it can be seen
under your clothes or during intimate moments with others. A good option is an ostomy wrap,
I've linked one below which I know comes highly recommended and it quite cute! Ostomy
wraps help hold and conceal your ostomy bag under your clothes without forcing you to
feel like you have to wear super baggy clothes all the time! They also work great for intimate
occasions to keep your bag from moving and concealed so that if you're insecure about
leaking or the bag distracting your partner it may be a good solution.
If you're just looking for something to help you feel as attractive as you really
are, then there are actually some wonderful lingerie sets designed specifically for people
with ostomy bags! These lingerie sets have panties which have pouches inside them to
hold your bag or feature garter belts to help secure your bag in place. The one brand I've
linked below is Jasmine Stacey, since I find her designs very pretty and also she personally
has an ostomy bag so she knows what she's doing!
For a tracheostomy tube or stoma, you can actually find lots of delicate, gentle lace
neck covers on sites like etsy, I've linked one shop that had really pretty designs down
below. This is probably also something you could DIY if you don't wanna buy something
premade by simply getting some thicker embroidery lace and hand sewing it to some ribbon. The
main thing is that it still needs to leave you room to breathe properly so you don't
want to get a cover which is too tightly pressed to your neck or isn't breathable fabric
so natural fibers like cotton are better!
Now finally! I want to talk about hospital glam! If you don't know what hospital glam
is, it's a hashtag slash internet trend started by blogger Karolyn Gherig, featuring
fashionable shoots of chronically ill peeps while in the hospital.
Personally, hospital trips are when I'm feeling my worst and least attractive and
generally don't have the energy to dress up. My main way of feeling cute during a hospital
stay is finding myself some truly adorable Pajamas, I usually go for a tank top and shorts,
so all the medical staff have easy access. And with some super cute and cozy socks to
go with it I'll at least feel pretty cute when I'm for a long haul. Here's a star
wars PJ set which is one of my faves that I pair with some R2D2 socks, and possibly
a cosy cardigan. Cosy and cute is totally a thing, so embrace it.
When you're in the hospital you're probably also feeling at your worst so just try to
do something that makes you feel great, like the sky is the limit here. I just bought a
diadem for a lord of the rings elvish cosplay, but honestly I'm thinking of me laying in
my hospital bed, hospital gown and all just throwing on that tiara. Like, no one can stop
you, you are the veritable queen of this two person hospital room and you rule the area
from the curtain to the window. You are not just an attractive human being you can let
yourself exceed human bounds and become an ethereal being all while strapped into an
IV line it's totally possible, okay, just trust me on this one!
And well that's all I've got! I hope that all these tips were helpful to you, and gave
you guys ideas on ways to up your fashion game and use the typically "less attractive"
parts of your chronic illness as moving art. And I also hope that this video will encourage
you to remember that you are beautiful and desirable not inspite of your illnesses and
disabilities, but including them and how they help make you the wonderful person that you
are! If you want more ideas feel free to check
out my Instagram or Tumblr at 65PinkRoses same as it is here, or to check out my other
videos on this channel despite how outdated they are….they will probably still give
you some other fun ideas! Thanks so much for watching!
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