Butterfly Effect: My Journey into Designing for Accessibilty

By Natasha Kacharia from the United States

A butterfly flaps its wings in the Amazonian jungle and a typhoon occurs in Europe. Tiny things,
according to Chaos theory, are the things that change the world. I am not sure if this applies to the world
around us, but what I know for sure is that a sequence of small events shaped my passion for digital
design, specifically in the field of accessibility and healthcare.

Growing up, I designed skating dresses. I absolutely loved employing design and aesthetics to
create dresses that expressed who I was, that told stories. However, in addition to my love for design and
storytelling, I am also a numbers girl. I crave the certainty that disciplines such as computer science and
mathematics provide. My study in Stanford’s Computer Science track in HCI perfectly encapsulates both
my interests, as I firmly believe UX Design is another vehicle to tell stories. Utilizing graphic designs,
word clouds, flow charts, and data visualizations, I can create consistent and strong messages that
resonate with users. In addition to my time at Stanford, I had the opportunity to explore my love for
design in the workforce. At Microsoft, I designed and prototyped in-app training content to onboard new
employees with MSXI applications, utilizing software such as Figma, Power BI, and WalkMe. At Ford, I
designed an interactive quiz for consumers to help them determine if buying or leasing their next vehicle
is right for them. Both these experiences solidified my passion for human-computer interaction.

Yet, while I knew I wanted a career in digital product design and I knew I wanted to make a
positive impact, I lacked insight on what. It was through an invitation as a fellow to attend the 2021 Lime
Connect Symposium – a leadership development program designed for high potential university students
who happen to have all types of disabilities – that I realized I was meant to design in healthcare. From the
age of 17, when I was diagnosed with the autoimmune disorder ulcerative colitis, I have had an ever-
growing interest in the healthcare industry. But since I did not have a desire to pursue medicine, it did not
appear to be an industry where I could make a difference. Meanwhile, through my numerous emergency
room visits and hospitalizations, I noticed many gaps in the patient experience. For instance, my second
week of my freshman year of college, I was rushed to the emergency room for excruciating thigh and
knee pain. The medical staff spent an hour asking about my previous medical history and running the
same medical tests that I had undergone less than three weeks ago in my hometown’s ER instead of
attempting to relieve my pain, as they did not have access to my previous medical records. My experience
was not unique; there is not a seamless way for physicians to access past records or for patients to transfer
them to new hospital systems. Some other common pain points of my patient experience have been
paying complicated hospital bills, coordinating with insurance, communicating my needs to physicians,
and obtaining medical help outside of regular business hours; many of these were only exacerbated by the COVID-19 pandemic. Through Lime Connect and then CCYAN, I had the pleasure of meeting other
disabled students and professionals who were using their past experiences, knowledge, and talent to affect positive change to make the world a more inclusive and accessible place, making me realize that I wanted to do the same.

Yes, I admit, there are some days that wish I did not have ulcerative colitis, but if I was never
sick, then I would not be me. My experiences, the good, the bad, and the ugly, have shaped who I am
today. I am not sure where the future will take me, but I am excited to flap my wings and hopefully make
the world a more accessible place.

Featured photo by Ash Moore from Pexels

Calling in Sick and IBD

Hustle culture - committing your life to your job and career - has become normalized and even expected in young adults. After graduating university, many find their self worth linked to their career, earning promotions, competing with coworkers, and impressing your boss. As a twenty something year old with Inflammatory Bowel Disease, the struggle to balance work with your health is never ending. 

Those with a chronic illness understand not to take life for granted and that each day can be as unpredictable as the next, but we often forget this and get caught up in prioritizing a career over our own health and wellbeing. Calling in sick to work is inevitable, everyone has to do it at some point in their lives, whether it’s for a mental health day, the flu, or a flare-up. Yet, there are so many negative stigmas around missing work and around prioritizing your body. 

The feelings of guilt that come with calling in sick to nurture your body, whether you see your body deteriorating, know a flare is coming, or if a flare comes out of the blue, can be overwhelming. The stigma associated with hustle culture and calling in sick can feel disheartening. I have always had a hard time taking a sick day, and I always felt like I was letting my boss and coworkers down and that I wasn’t worthy of employment. Intense feelings of frustration and annoyance invaded my mind when debating whether to call in sick and these intrusive thoughts caused my body more stressors on top of being physically ill. I often remind myself that prioritizing my body is my number one job. Without my health, I wouldn’t have a job and I wouldn’t be able to participate in all the amazing experiences life has to offer. 

A helpful comparison to calling in sick is the safety instructions reviewed when boarding a flight, right before take off. The flight attendant always reviews the emergency instructions, stating that if the plane were to lose oxygen, you are always to put on your own oxygen mask before helping someone else. Putting yourself first will enable you to not only succeed at your job, but also to succeed in other aspects of life. If you were to ignore your body’s signals that you need rest, you will become more sick and risk the most important thing, your health. 

You are not weak, undeserving, or less important than your colleagues and friends because you need to call in sick more often than the average person. You are strong, resilient, and brave. We battle a viciously unpredictable disease that many do not understand. Do not let your worth be measured by whether you call in sick. I challenge you to listen to your body and honour what your body is saying, you never know how far you will fly until you respect and love yourself and with that includes respecting your body’s limits. 

Recently, I took two sick days at work due to a small flare up and my boss and coworkers were overly supportive. Although feelings of guilt surfaced when I was making this decision, the second I returned to work, everyone showed how much they cared about my wellbeing.

If you are experiencing toxicity in the workplace, contact the Human Resources department. If your company does not have a HR department, set up a meeting with your boss or manager. If you continue to be pressured to not take sick days, to put your job before your health, this may be time to look for another job and boss that cares about you and allows you to put your health first. 

On this note, being able to call in sick has undeniable privilege. Many people across the world are unable to call in sick without suffering financially or being penalized at work. Openly having these hard conversations during the hiring process or with your HR department will contribute to breaking the stigma and providing accommodations for those that are chronically ill. It’s important to speak with your boss or HR representatives regarding sick leave, paid sick days, and working from home options. Speak up to your government representatives and express the need for a handful of mandatory paid sick days across your province or state.

Thoughts on IBD in the Workplace

Please provide your most recent job history. Done. Proceed to the next page. Do you have a disability that you would voluntarily like to disclose? This can include autism, blindness, cerebral palsy, missing limbs, autoimmune conditions like lupus, gastrointestinal diseases like Crohn’s disease or IBS…I blinked, and stopped. What did I just read? 

In the past, I had always checked No, I don’t have a disability or history of disability. But now, as I start to look for Physician Assistant (PA) jobs, I can’t ignore the fact that I live with ulcerative colitis (UC) and flares can rear their ugly heads even when I take the best care of myself. I never had to sit and ponder this question before. Because of the way disabilities are viewed by most people, stigma swirls around it, leaving previously unaffected people like me unaware and uneducated about progress being made and the struggles still faced in the workplace. Disabilities are commonly viewed with negative connotations - several of my coworkers and other colleagues that live with chronic illness and/or disabilities have highlighted this and spoken powerfully against this negativity. Living with a disability doesn’t mean that you don’t have as much to offer. The people I’ve met through the chronic illness and disability community are some of the most resilient, creative leaders I know. We face our challenges and continue living and advocating against all that is physically or mentally against us - we have to draw incredible strength and grow up sooner and in ways that most others don’t. 

However, I still struggled with multiple emotions as I sat, mulling my thoughts, stuck on this page of a job application. I have never considered myself as a person “who has a disability.” I felt guilty - would those with disabilities think that I don’t support them since I don’t want to group myself with them, giving myself another label that’s often viewed as weak? Am I misrepresenting those who do have disabilities because my UC has been so mild and I am largely functional? I felt that I don’t belong in the “disability group”, but I also can’t deny that I have a chronic illness that can be disabling in a variety of ways. I definitely consider myself lucky and blessed, but I know that my UC can change throughout my life and potentially become more difficult to control. I struggled to work through these thoughts, but then thought about how my growth this year from being more involved with advocacy has given me tools to advocate for myself and to continue learning from this community. 

My options were: 

1. Yes, I have a disability, or have a history/record of having a disability

2. No, I don’t have a disability, or a history/record of having a disability

3. I don’t wish to answer

What should I choose? It had to be either #1 or #3. I couldn’t lie - I was more afraid that it would not go over well if I did get the job and had to bring up my UC later to my employer. But then, if I marked “yes”, could that jeopardize the chances of me getting interviewed or getting a job? I’ve heard awful stories about those who hid their disability from their employer because they knew it would affect them being hired or even interviewed. Luckily, I was working with another healthcare provider who had been diagnosed with lupus over the past year and was also learning how to navigate her chronic illness in the work environment. I asked her what she thought and we ended up having a candid conversation - I realized that if marking “yes” caused me to not get an interview or a job, then that job wouldn’t have been supportive enough for me anyway. Perhaps this is my stubborn streak coming through, but I hope that working in the medical field will hopefully make potential employers more understanding. However, I know that the stigma that encircles chronic illness and disability still permeates the workplace, and this fact will stay on my mind throughout my job search. 

In the end, I did mark “yes.” It is more important to me to have the chance to advocate for myself and be supported rather than hiding my diagnosis out of potential embarrassment or fear of how I would be treated because of it. Maybe this will backfire, but by being up front about my UC, I’ll feel more comfortable in my workplace. I hope that I’ll be supported enough to communicate any issues I’m having or if I do end up needing some sort of accommodation in the future. I’m very excited about applying for jobs and starting this new chapter in my life and career as a PA, but I still have much to learn about disability in the workplace. I hope by learning to navigate these waters, I can help others who may be in the same situation - questioning if they fall into the disability category or not, wondering how they should approach disclosing (or not disclosing) their condition to their employer. Since the US just hit the 30th anniversary of the Americans with Disabilities Act, I also plan to continue to educate myself and learn more about the disability community in conjunction with chronic illness. We should never have to choose between our career and our health, and I hope I can join many others who are working to make this a reality for all who are affected by chronic illness or disability. 

Advocating for Your Illness in the Workplace

A word with health advocate, Samantha Reid

The CCYAN fellows recently had a chat with IBD blogger and health advocate, Samantha Reid, to discuss her take on managing IBD in the workplace.

CCYAN Fellows Leah Clark, Erin Ard, and CCYAN founder,
Sneha Dave, video-chatting with Samantha Reid

In February of 2010, Reid received a surprise that she never anticipated for during her birthday celebration. Three days after she turned 18, she was diagnosed with Crohn’s disease and began her adult life with questions, concerns, and ultimately, an ambition to help others with her disease.

Reid has had her fair share of experiences navigating her Crohn’s disease both in college and work. Majoring in english in college and working as a communications director at her previous job, Reid gained a solid foundation in writing, communication, and outreach. Now, her job allows her to focus on health and advocacy in the professional environment. Currently a digital director for the nonprofit organization, Patients for Affordable Drugs, she strives to change policy to lower the price of prescription drugs. Patients for Affordable Drugs is a patient organization, and Reid actually started there as a patient, so her peers understood her illness and created a safe environment for her to work in. Reid understands, however, how fortunate she is to be working in a flexible environment that meets her accommodations.

“I realize the fact that I’m even able to disclose my disability to my boss and coworkers is a privilege, and not everyone has that ability.”

Reid went on to encourage those with IBD to “play it by ear” and do what one feels comfortable with when discussing their health with their boss and coworkers. Disclosure can not only be an important step in establishing a safe work environment, but it can also be used as a learning opportunity for your peers. “It allows me to be more open and it allows my supervisors to be more open as well; it creates a space for dialogue,'“ Reid explains.

Along with being the digital director, Reid also has a successful blog, Sicker Than Your Average, that she frequently shares experiences with IBD on. She explains how her presence on social media has helped her with IBD advocacy with her work. “For all of my adult working life, most of my coworkers have known about my illness by default. Whether they know because they follow me on social media and see my advocacy work or they know because I’ve had to postpone a meeting because I was sick, most of them know.” Reid expressed how important communication upfront can be when tackling IBD at work. Giving your boss and coworkers a heads-up when sensing a flare or preparing for many doctors appointments can not only give you a sense of ease with planning, but also can inform your peers about the severity on an issue. With invisible illnesses, it can be hard to truly express how important your health is when others can’t see your pain.

“When it comes to asking for accommodations, communication is key. Any workplace that would be retaliatory about me needing accommodations is NOT somewhere I would want to work.”

Sometimes IBD can feel as though it is getting in the way of performing your best at work.
It’s important to remember to do what feels comfortable to you and prioritize your health.

Communication is not only good for planning for the future, but it is good for setting up workplace accommodations. Accommodations are there to alleviate any hardships put in place because of your illness. These can include having your office desk closer to a bathroom or having options to work from home. “In my current position, I have an agreement with my boss that I can work from home every Friday. Because of my Crohn’s, I struggle with extreme fatigue, so even having one day a week where I don’t have to get dressed up and commute saves so much in terms of my energy levels,” Reid explains. She said it makes an enormous difference to her, and she feels valued at a workplace that can accommodate to her needs.

One topic that Reid discussed when advocating for yourself in the workplace is the drive to, in a sense, redeem yourself to your coworkers when you are feeling healthy. It’s understandable to feel pressure at work to perform well, especially when you feel as though you are slacking because of your health. Missing work because of appointments, hospitalizations, and just sick days in general can cause one to feel inadequate in their job performance.

“For me, when I am feeling well, I probably overcompensate at work to prove myself. No one asks that of me, but I know it’s important to gain that goodwill while I can so that when I fall into a flare, people are more understanding.”

It’s important to realize that it is okay to take time for yourself to get better. For many IBD patients, health is a number one priority, and people will be understanding. Showing your boss and your coworkers, when you are healthy, that you can do your job right and well is completely fine.

With all the advice Samantha Reid gave the CCYAN Fellows, it’s clear that she is a remarkable IBD advocate and presence in the community. Her constant dedication to IBD awareness is shown through her work and her attitude towards life. Her insight on what to do and what not to do when it comes to advocating for your illness is the workplace comes from years of experience. Making efforts to communicate effectively with your boss and peers, setting up boundaries and accommodations to meet your health needs, and putting your health first when necessary are all great ways to help those with IBD navigate their work with ease. We at CCYAN hope those in need can use this advice and pursue their career goals without feeling held back by their diseases.

The CCYAN Fellows would once again like to thank Samantha Reid for taking the time to discuss this topic, and they look forward to seeing more of what she does in the future with health advocacy.

Samantha reid

Samantha Reid is an exceptional health advocate and role model in the IBD community. Her insight on advocating for yourself in the workplace not only those with IBD great advice, but also sheds light to important issues on workplace accommodations for all. For more information on Samantha Reid and places to connect with her, check out her social media and other platforms

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