Recently, I engaged in a dialogue with Katy Brennan, a versed teen activist from
Chicago. Her original activism is centered around her chronic illness, and a plethora of
related activism efforts have sprouted from it. Yet, her illness does not constrict her as
she will be enrolling at Columbia University this fall, eventually intending to utilize
legislation to radically improve the lives of those she advocates for. Katy is already
saving the world as a recent high school graduate, and it is thrilling to ponder what she
might do next. I questioned her carefully to best learn how we can all be better activists.
When and why did you become involved in writing and activism?
I started writing around three years ago in order to document my journey with
chronic illness. My illness, Ehlers Danlos Syndrome, is a rare heritable connective
tissue disorder that leads to joint dislocations, organ fragility, chronic fatigue, and more.
As I searched for doctors familiar with my condition to treat me and navigated peers
who didn’t believe my illness was legitimate, writing became a catharsis. After a while,
though, I realized the mechanism I had been using for my own therapy was actually a
catalyst for change and that I was becoming better known by the EDS community at
large. Around that same time, Trump took office and health care for every American
with a preexisting condition like EDS became uncertain. I began to work for my local
Congressman as he was passionate about National Institute of Health funding and the
continuation of health care coverage for millions of Americans with disabilities. Over
time, I became more comfortable speaking at events, lobbying politicians, and voicing
my opinions in opinion articles. I went on to work for the Governor of Illinois when my
Congressman lost his race, began to speak at events on chronic pain and disability, and
kept writing about issues I felt passionately about. Over time, I began to consider issues
related to disability rights and became involved in climate justice, gender-based
violence and overall youth participation as well. I would say that writing was my original
medium of activism, and I would really encourage anyone interested in speaking up to
try writing out their opinions first. It’s a great way to get involved in activism in a less
daunting form than speaking or protesting.
Where has your writing been featured?
I started documenting my experiences on The Mighty, a site for people with
chronic illness and disabilities to tell their stories, as I realized that my challenges may
resonate with others who also feel alone. My work on my illnesses has also been
features on Al Jazeera, Yahoo News, The Odyssey, Deaf Poet Society and more. Most
recently, I have written some pieces not related to my personal experiences with chronic
illness. I was a staff writer for over a year for News for Youth Advocates Today,
NYAToday, which was unfortunately just shut down. There, I covered political issues,
particularly international relations, in the form of long-form opinion articles. I have also
written for various school publications.
How much writing have you done?
I do not have a solid number right now, but I know that I have over 80 articles
published online right now. All of those were published in the last few years, so for
anyone who wants to get started and build out an extensive portfolio, it definitely can be
done relatively quickly.
Becoming a well-known activist must incite a self-imposed obligation to represent those with Ehlers Danlos Syndrome (EDS). Does this internal pressure—and, perhaps, external expectations—to serve your specific community ever become overwhelming?
In my experience, there definitely is a struggle to find a good work-life, or in this
case, activism-life balance for activists in all fields. I don’t feel an inherent need to speak
up on every issue, but it is difficult to balance school, jobs and activism work when
issues like the Affordable Care Act repeal, the Individuals with Disabilities Education
being dismantled, and overall lack of proper training for doctors on EDS are ongoing
issues. It feels like once one problem is resolved, another four take its place which can
be disheartening and quite frankly, exhausting. I will say that I try to make a point that I
do not speak for all patients with EDS. Every patient has a completely different
experience with this syndrome in terms of how their daily lives are affected, which
related conditions they face, and what their quality of care is. Where I am stable enough
to attend college at the moment, that is not the case for thousands of others diagnosed
with EDS, and I do not feel that I can speak to theirs or others’ experiences; I can simply
tell my story and advocate for what I believe in and hope that it empowers others to do
the same.
Can you elaborate on your history of political activism? How did you get involved in politics? Have political experiences shaped your mindset or intensified your desire to help others with Ehlers Danlos Syndrome (EDS), or both?
I explained above a bit of how I became involved in politics, but to be more
specific for anyone who may be trying to take the first step, I can detail how I truly
engaged in political campaigns. I first became involved in a local congressional race in
my district in March of my freshman year after hearing my representative speak at a
school club meeting. I reached out to someone on his campaign team via email
following the meeting and soon was taught the ropes of walking door-to-door, making
calls and planning events. It is truly as simple as picking up the phone or your computer
to shoot a call or email to your local representative’s office to find out how you can get
involved. I would definitely say that when I joined the campaign, I felt passionately about
some issues close to my heart due to my EDS such as the ACA, IDEA, the Americans
with Disabilities Act, and more. Being in that environment of making calls and often
encountering constituents with the same concerns about health care only intensified my
passion for politics and advocacy. I loved that I could be the one to discuss these issues
on the phone or at doors with a worried constituent, and luckily, the campaign I was at
was super supportive in giving me time off if needed, allowing me to mostly call
constituents due to my joints, and even let me film a commercial about my experiences
and the need for more NIH funding for rare diseases. Leaving that campaign, I definitely
wanted to get involved again and was soon onboarded onto the local gubernatorial
race. Both campaigns definitely strengthened my desire to help others with EDS
through my interactions with constituents and the underlying political climate.
Has your activism surrounding your own disability inspired you to join other causes?
Additionally, I along the way was recruited to causes that often intersected with
disability such as violence against women and climate justice. That work was closely
linked to the United Nations Sustainable Development Goals, so I have since served as
a delegate to the 62nd commission on the status of women (CSW) to advocate for
youth voices, climate justice, and disability rights. I also am now a UN global schools
advocate and worked for a youth publication on similar issues called NYA Today until it
closed operations recently. Collectively, my areas of work seem very distinct and not
connected, but I would say it all focuses around youth engagement and basic human
rights with a focus on disability due to my personal interest.
What are your future plans?
This fall, I am starting at Columbia University in New York. I am hoping to major
in political science with an emphasis on international politics and political theory while
also concentrating in human rights and Spanish (Hispanic studies is the official program
that I would pursue). It sounds a bit ambitious, but I am hoping to pursue a law degree
and L.L.M. in international human rights law following graduation, so all three fields are
very relevant to that end goal. I would love to someday work for an organization like the
ACLU, Center for Reproductive Rights, or even an entity like the United Nations in order
to use my law degree to create tangible, legal change on issues like disability rights and
health care.
What advice do you have for aspiring activists at large? What advice do you have for future activist with an illness? How does this niche of activism differ from other types of activism?
I have two pieces of advice for aspiring activists. First, take the leap and get
involved in an issue you care about. This may mean sitting down and reflecting on your
strengths and weaknesses. Do you like writing? Pitch a publication. Do you love
speaking? Find an event to speak at or a political forum. Do you feel better behind the
screen? Look for a social media fellowship with a nonprofit. Figure out what cause you
care about, identify your strengths, and reach out. I applied to so many fellowships and
opportunities over the years that I technically did not qualify for because I was too
young. Yet, I still received a handful of them, and that certainly would not have
happened if I did not take the first step. For any female activists, there are studies that
show that women will not apply to positions unless they are 100% qualified where
underqualified men will apply; break that trend, and just apply to everything you can. My
second piece of advice is to find a mentor. The most influential factor in my
development as an activist has been the feedback and opportunities provided to me by
my mentors at various nonprofits and internships. Anyone is always welcome to reach
out to me for advice, but I also urge you to find someone in the field you are passionate
about if your thing isn’t necessarily disability rights or gender equality.
It often felt impossible to be an activist due to my chronic illness. Chronic fatigue
can really hinder your ability to get the bare minimum (schoolwork, chores, etc.) done,
let alone lobby congress for change. I truly recommend taking it one step at a time, not
taking on a position that requires more than five hours per week of work to start and
learning how to speak up without using up all your energy. I often refer to an inverted
pyramid of action items depending on energy that activists with chronic illness can use.
As the pyramid widens and energy increases, you can go from just tweeting an opinion
(least energy) to making a call to your representative (a little more energy) to actually
attending an event (more energy) to leading a full-fledged social media campaign or in-
person protest (most energy). Every action item, no matter how big, makes a difference,
so don’t settle for self-loathing or inaction, just find a new medium of activism that
doesn’t cause a flare.
My niche of activism is a bit different from others in that a bulk of the work is
online or remote in the disability rights and chronic illness community. A lot of this
comes down to issues of accessibility (so many political and private events are not
wheelchair accessible or cannot provide captioning or interpretive services) and ability
to actually leave the house to go to a protest or event in the first place. That is not to say
that there are not events and rallies frequently, but I would say that a lot of the focus in
disability rights and chronic illness activism is on awareness which can be accomplished
online. It is definitely a privilege to be able to attend events in person, and I do
acknowledge my privilege to attend political forums and relevant gatherings
occasionally due to me not requiring captioning, interpreters, wheelchair accessible
spaces, etc. However, there are still days I cannot do it, and the same holds on
different scales for most people in these communities. It is important for other areas of
activism that intersect with disability (gender equality, climate justice, immigration
reform, etc.) to remember that sometimes we cannot show up due to accessibility
concerns, but that does not mean that these issues do not affect us the same, if not
more, than other populations. It’s definitely difficult to navigate the best medium of
activism in this particular niche with this in mind. In an ideal world, all 50 million
Americans with disabilities could flood the streets and demand better health care,
accessibility and quality of life, but this unfortunately is not a reality, so activists are
forced to adapt both out of personal and communal necessity.
Story by Xavier Evans
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