**Before I share my story – I want to acknowledge that this is simply my experience. I recognize the privilege that I have, even as a person with a disability, and know that many people have very different experiences. Please keep this in mind as we all continue to learn and grow together.
Life with a disability doesn’t mean you can’t be swept off your feet!
Growing up with a disability
I was born with osteogenesis imperfecta (OI) a rare genetic condition that causes my bones to break easily. My parents didn’t know until I was around 9 months old when I broke my collar bone trying to roll over. Starting from a very young age, I was delayed in my gross motor skills, and my parents were originally told I wouldn’t be able to walk.
But, thanks to a lot of hard work and advocacy on my parents’ part and wonderful PTs I did learn to walk at 3 years old. Growing up and in school, I mostly used a walker and wheelchair to get around but remained as independent as I could.
I grew up believing the philosophy that you just had to continue living life, no matter what. I don’t even think my parents know the number of times they took me on a flight with a broken leg or right after surgery. Possibly for the best, I don’t really remember any of this either. But they weren’t going to let anything slow them down, even a genetic diagnosis. My parents did everything to learn about OI and find ways to help me continue to grow and live my life like any other kid.
Beyond this mentality, and as I got older, they instilled the importance of advocacy and standing up for myself. I always know that advocacy starts even before birth, and as a child with a disability it’s even more important to know how to do this.
The need for advocacy is everywhere, at every age.
My school was going on a field trip that wasn’t accessible – I had to advocate for myself; teachers didn’t want me to play on the playground – I had to advocate; friends’ parents were nervous to have me over – I had to advocate.
It sometimes gets exhausting, and I’m sure it was exhausting for my parents but they did it because at the end of the day, disability or not, I’m just like everyone else.
Being just like everyone else is what I did. I got my license (even though it terrified my parents), went to proms and football games, and stayed out too late. I really didn’t think about my disability too much.
Sure, I had friends with the same disability that I saw at national conferences, and was inspired and motivated when I saw people like me become doctors and lawyers. But in the day-to-day, it wasn’t at the forefront of my mind.
Getting out of my comfort zone
When I went to college, my disability became a little bit more front and center. I went to school in Cincinnati, possibly the hilliest place in the Midwest I could have chosen. I only knew a couple of people and so it took me some time to find my people – who were willing to help me on occasion (especially up those hills) and reteach individuals about who I am, beyond the disability. Previously, growing up with a disability and in grade school, I was around really the same 50 kids. It was comfortable and familiar.
While in college, I grew into who I was, disability and all. I learned to take the quirks and annoyances that came with having a disability and instead accept it for what it was and also sometimes make jokes about it. Instead of pretending it didn’t really exist, I decided to let it be part of my identity.
Meeting my match
After undergrad, I decided to move to the Washington, DC area for a job. I had only visited a few times, but figured, why not? There was no reason to stay in the Midwest. I packed up my things and moved, knowing nobody. I didn’t realize how scary that would be until after my parents left and it was just me and my new dog that I “accidentally” found at the Humane Society the week prior.
Once I got settled, I decided to dabble in the world of online dating (this was pre-Tinder and all the other apps that people use these days). I really took my dating not seriously at all (sorry to all my ex-dates between 2012 and 2013).
One of the biggest obstacles I came across when I started the online dating process was whether or not to disclose my disability. On the one hand, I wanted to be forthcoming, but on the other, I wanted people to get to know me for me and my fun personality before making a judgment based solely on a physical aspect of me.
So, I did what most 22-year-olds would do and decided not to disclose upfront and instead told each individual as it came. Luckily, I did not find this to be much of a problem, and am very grateful for that.
One day, I received a fun, unique message from a pretty goofy-looking guy. He had longish blonde hair but seemed engaged in conversation and was fun to talk to.
After a few days, I shared with him that I had a disability where my bones break easily. In response, he says verbatim: “OMG we have so much in common.”
Come to find out that he also had a disability – cerebral palsy. Neither of us had disclosed upfront and we weren’t on a special dating website for people with disabilities – we just happened to find each other.
As we came to find out, while we both have disabilities, our needs and experiences are drastically different. While he can reach all the things on the top shelf for me, I can provide all the fine motor skills he is unable to do. But best of all, when I get tired from walking, I can sit on his lap and we can ride around in his wheelchair!
We don’t let our disabilities prevent us from doing anything we want to do. We travel, see concerts, go out with friends, everything that a couple enjoys. Sure, figuring out some of the logistics is a little more challenging, but we always make it work.
Let’s remember that it’s not “inspiring” that we are able to do these things because so do many other people every single day. Society certainly does not make it easy to travel with a disability. But there are so many great disability travel bloggers and websites out there that have aided us in our trips.
As a couple, we have decided what is important to us and will do everything we can to make those things happen. Even if it maybe wasn’t the best or easiest idea.
When we decided to expand our family, we had the challenging question of whether to try naturally, giving our child a 50% chance of having OI, or go the IVF route, which would ensure that our baby wouldn’t. We met with an IVF doctor and genetic counselors and at the end of the day, we did what was best for our family – give it a shot and see what happened. Going into it, we knew that even if our baby had OI, what better parents to have than those who also have OI or other disabilities and know exactly what it’s like and how to advocate.
If you couldn’t guess already – our baby girl, Caroline, inherited my OI. Like any parent, it was upsetting at first, but I knew that she’d be ok. As parents, we decided from day one that we would not let OI impact any part of her life and that she will be treated just like any other kid, disability or not.
Two years into her life, that is exactly what we’ve continued to do. She has friends, goes to daycare, climbs on just about everything, tells us “no” 50+ times a day. Pretty much what you would expect from a typical 2-year-old.
She’s a social butterfly and a smarty-pants and we want to expound on her gifts and strengths as opposed to focusing on her weaknesses and delays. No kid is the same and it’s so important to remember.
Earlier this year she had her first major break – her right femur – during a physical therapy session. It was very clear she was going to need surgery and of course, we had our first big family trip planned for a week later.
The best thing we did and have learned to do in any situation is to be calm and just move ahead like we would any other time. It was heartbreaking to see Caroline in so much pain but we worked to emulate the feelings we wanted her to feel – calmness and that she was safe.
And guess what- after her surgery she was ok, and in a week or so, she was totally fine and back to being her crazy self (minus being unable to move because of her splint). We did have to reschedule our big trip, cancel plans, and work weird hours, but we did what we had to do to make it work and continue to create that positive and accepting environment.
Wouldn’t you know, our rescheduled trip is in a few weeks and yet again, Caroline has a broken leg. But, we are going anyway because a broken bone isn’t going to stop us.
Life (even with a disability) is for living!
Through this journey we call parenthood, I have learned that flexibility and adaptability are key.
Not slowing down!
As a parent to a child with a disability, a person with a disability, and a wife to a husband with a disability, I understand how unique the journey of life can be.
I work every day to advocate for our family and improve the future of Caroline’s life, not just on an individual level but on a systemic level, to help ensure that people with disabilities are included and accepted in every part of life.
Having a disability in every aspect of our lives is hard and provides challenges every day, but it’s all we know, and wouldn’t have it any other way. It’s part of our journey and there is no shame in that. At the end of the day, while disability and having a child with a disability is challenging, I know that Caroline is going to grow up as a strong, independent lady that knows how to advocate for herself, push boundaries and do anything and everything she wants to do.
Author: Jessica Minor was born and raised in Indianapolis but lived in Maryland for 8 years. Upon returning to the Indy area, she now is the Director of Community Engagement for a disability services organization where she spends all day making connections, talking advocacy, and educating on disability inclusion. She loves building up her community, is a self-proclaimed foodie, loves good bagels, and is still obsessed with the Backstreet Boys. She lives in Fishers, IN with her husband, two-year-old mini-me, and her two fur babies. Jessica is also the Market Director for Cool Moms of Hamilton County.