Personal stories

Waiting in the Wings

My 20s were a time of growth and a journey toward becoming the woman I am today. There were many factors that empowered me in this journey, including my own personal drive and ambition, my friends, and my community. But I think the single most influential support I had in my 20s was my parents. Whenever my journey into adulthood got rough, they stepped in to smooth out the bumps. At the same time, they stayed in the background to let me learn to address my own challenges.

I started my 20s by finishing college and heading to law school. This was my first time moving out of state, which felt like a big step. I know that my parents were worried about my venturing even further out on my own, but they never tried to reel me in or stop my march towards independence.

When I moved to Chicago, I had already been managing my own care team since the age of 17, but this felt different. I was on a new campus where I had to find my help outside of the dorms. It was the first time that I hired caregivers who were significantly older than me. I was also in an apartment instead of a dorm for the first time. My parents helped me set up my place and get comfy with my new responsibilities. They even bought me a time clock for my caregivers to punch in to keep track of their hours. When they headed back home, I knew that even though it was a three-hour drive, they were only a phone call away.

I remember one weekend in law school when the power went off in my 4th floor apartment. I was afraid to sleep that night without my BiPap, so my dad spent the night talking to me on the phone, so I could stay awake. The next day they turned on the power long enough for me to go downstairs, and I spent the weekend at home with my parents. On that weekend and countless other times, my parents provided me a sort of safety net that enabled me to take the risks I needed to take, like going out of state and living in an apartment.

They continued to provide me that same support when I finished school, bought my condo, and started working as an attorney. They helped me plan my place to perfectly suit my needs and were always there when emergencies arose like last-minute call-offs and broken wheelchairs. Once, when I had been snowed in from my office for a week, my mom came over and shoveled my entire three-block walk to work — the WHOLE PATH! With support like that, I knew my disability could not hold me back.

Throughout my young adulthood, my parents never tried to convince me to roll back my ambitions or to dream smaller. Instead, they gave me the freedom to push boundaries and defy expectations, all the white standing in the wings in case I stumbled or just needed a little boost. I could not be who I am today without their support and love.

About the Author

Image Description: Katrina is a white woman, smiling in this picture, sporting a pink blouse, black lace cardigan, dark rimmed glasses, and beaded necklaces. Her hair sits just past her shoulder, brown and curly, with bangs sitting at her glasses. She appears to be in a black powerchair, contrasting the white wall background of the photo.

Katrina Kelly
Katrina Kelly practiced as an attorney for 15 years before she retired on disability. She is also a mom and a disability advocate. Katrina was born with spinal muscular atrophy, which requires her to use a power wheelchair and rely on assistance in day-to-day life. Her 13-year-old son has the same condition, so she spends much of her time helping her son and herself to navigate barriers. Katrina is an Indianapolis native, who loves living downtown. She has a chorkie and two sassy orange cats.

From Invisibility to Empowerment

Reflecting upon my younger years
I am 47 years old and my lived experiences started in the 1980s. When I was in elementary schools, we were taught about people with disabilities; people who were identified solely on what could be seen to the outside world. In the last 30 years research, technology, and awareness have finally started giving answers to people suffering with invisible disabilities. Society has been slow to accept that people can look “normal” and have a huge range of problems occurring in the brain and the body.

The Invisible Disabilities Association (IDA) defines the term succinctly:
“In simple terms, an invisible disability is a physical, mental or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgments. IDA also uses the term in a sentence: “People are parking in an accessible parking space with a placard, but they look fine. I wonder if that driver has an invisible disability.”

I would have felt supported if professionals listened, instead of telling me I was fine or that I was suffering from ‘stress.” I suffered for years in pain due to endometriosis, migraines, and interstitial cystitis.  I did not know how to ask for support or learn how to advocate for myself because no one thought I had any real health issues. Pain is subjective. Chronic pain everyday in some people is their “normal level.” They are not drug seekers or exaggerating, but they get dismissed by professionals, because they can not see the amount of pain in a person. While if a person came in with an obvious broken bone sticking out of their skin, doctors would immediately give the patient pain medication. 

2000-College and Parenthood
I became empowered once I realized that I had a lot of issues that kept getting worse. I started reading books and finding limited resources on the Internet describing what my symptoms could be. Living with chronic pain, I was not aware that others did not feel pain all the time. How could I know as no one one talks about how your body should feel everyday? I started reaching out to specialist who recognized my symptoms and did not dismiss my concerns. The healthcare system had caught up to my symptoms and they were finally able to be identified and treated.
It was an exhausting journey and at one point I was taking 11 medications. I hated being dependent on so many pills to function. Migraines were very difficult to find solutions for and when they hit me I had to get in bed and have no noise or light near me. I had to try to fall asleep before I would start throwing up for hours. I missed work and it took years to stop having them at least 3 times a week.
When I was diagnosed with Narcolepsy, my constant falling asleep made more sense. I would be driving and falling asleep at stoplights for no reason. It was like my eyes were too heavy and they could not stay open, so taking naps in parking lots became normal for me. I went through a lot of different stimulants until finally finding my current medication that makes me able to leave this house without being afraid of falling asleep in the car, in the middle of conversations, or even in the shower.
I became my own advocate in college. I asked to take tests in a room without a ticking clock because it made my anxiety so bad I would freeze. I explained my narcolepsy to my professors, so they understood I was interested in their classes. Once I was able to advocate for myself, supporting others became my future.

Moving forward:
It is 2026, and schools have realized that every child can not sit still all day and copy from a blackboard. I have supported many families in the state over the years with understanding and navigating the world of having “special needs” in school and beyond. There are accommodations for sensory fidgets, breaks for overwhelmed students, and aides to help with students who need help to learn. Plus, adults are also utilizing fidgets and taking breaks at work or at conferences!
Doctors are more involved with asking specific question to parents about their child’s whole development. Social media has provided more information on many of my invisible disabilities and health conditions. Its taken time, but I am thrilled that others are getting diagnosed and support much earlier in their life.
I have been trained in many mental health classes from national organizations. I have no problem discussing my anxiety and depression with others. I have been involved in many non-profit organizations to support others as a peer and as a parent. Knowledge is key. I have supported the empowerment of many families in various roles over the last 20 years. In the disability world, I have met people with such a variety of struggles. I may not have the same problems, but I am capable of seeing how difficult it can be to navigate a world where others lack the awareness, knowledge, or compassion to treat each person with respect and dignity.

About the Author

Image Description: This is me with my terrier mix dog Charlie. We are at our favorite place- the dog park. We are on the fake grassy area near the mulch where the dogs love to dig and run in. Dog bowls with fresh water are behind us next to the black fence that surrounds the fence. I have straight brown hair streaked with shades of lighter areas from the sun sitting near my shoulders. I am wearing shorts and am tanner then my normal pale white skin. I am wearing blue mesh like shorts with a lighter blue shirt with my sleeves rolled up due to the heat. My black sketcher sandals are on my feet secured with Velcro straps. My sunglasses are upon my head pulling my hair away from my face. I am smiling and slightly squinting from the sun. We are in partly shaded area but facing the sun. My lips are a a pink mauve color from my lipstick. I have laugh lines and slight shadows under my eyes due to allergies.

Angela Arlington
I am 47 years old and have lived and worked in the Disability community for over 30 years. I have worked with children as a Developmental Therapist and Early Childhood Educator. I have worked in the past for the Autism Society of Indiana and other nonprofit organizations supporting families. I currently tutor children of all abilities and help families with IEP advocacy. I have a 27 year old daughter, Violet, who also has complex health issues.

Familial Support and Work Accommodations: Two Keys to Disability Support

During times of distress or hopelessness, familial support and access to helpful resources are essential for coping with my disability. When living with a disability, it can often feel as though you are left to fend for yourself. However, knowing that there are people who support you and that you are not alone in caring for yourself makes an enormous difference.

Work-related resources are also crucial. Accommodations such as job protection during medical leave and opportunities to continue working within one’s limitations provide a sense of stability. These supports help me feel that I am not entirely at the mercy of my disability and that I retain some control over my life.

I have a condition called aplastic anemia, which causes extreme fatigue and shortness of breath. It also makes me more vulnerable to bruising, bleeding, and infections due to a weakened immune system. Family support plays a vital role in managing these challenges. My mother often takes me to medical appointments and helps me keep track of the many details involved in my treatment, especially when I am feeling unwell.

Workplace flexibility has also been incredibly important. Being allowed to adjust my schedule enables me to attend frequent and necessary medical appointments. Additionally, continued compensation during medical leave has been a tremendous help, particularly as I undergo a bone marrow transplant and am currently unable to work.

Together, family support and workplace accommodations have made a meaningful difference in my ability to manage my disability and maintain dignity, stability, and hope.

About the Author

Image Description: This image is a bit blurry, but it depicts a smiling young black man sitting on a bench in front of a yellow brick building. He has his hands clasped together, with a watch on his wrist, and is wearing a white t-shirt and blue jeans.

Artist Bio

In this picture I was participating in a photoshoot aimed at telling my story . My story as an artist and the light that comes with being one . It took place in downtown Indianapolis, the city that birthed and shaped me to this day.

Darrel on the impact of support: In my times of distraught or hopelessness. Familial support and resources to succeed. Many times it can seem like one is left to their own demise when dealing with a disability. But to know that there people that have your back and that you have help taking care of yourself makes a world of a difference. And resources such as being able to leave work and have your job protected to having other work opportunities despite one’s restrictions. These things make me feel like I’m not at the mercy of disability and that I have some sort of control in my life . 

Darrel on his disability: I have a condition called aplastic anemia. It makes me very fatigued and short of breath. Also it makes me prone to bleeding and bruising as well as a weak immune system.