The story of two lives, united by a common path.
Hiya! I’m Kirsty, a 22-year-old independent researcher and international traveler from Houston, Texas who got to know Our Normal during a recent trip to Sweden. As a fellow of the Watson Foundation, I’m spending the next year traveling the world to study what I both know best, yet still have so much left to learn about: my family. I’ve grown up as one of three, alongside a twin brother and an older sister. My sister has cerebral palsy, a physical disability that limits her motor function and speech, although that does not stop her writing award-winning poetry or arguing with me over what to watch on television.
I’m Alexandra, a 26-year-old Master’s graduate currently employed as a Junior Consultant at Our Normal. I have a dual heritage, being half Spanish and half Swedish. I come from a family of three sisters. My younger sister is 22 years old, and my elder sister is 28. Both of them are incredible people, but my older sister has a unique characteristic, which is that she is a person with intellectual disability. Growing up with and caring for my older sister, I’ve had the privilege of experiencing a world that, while unique and precious in many ways, can also present its own set of challenges.
Childhood
Kirsty: When you’re a young kid, and especially if you’re younger than your sibling, disability doesn’t really exist yet. That’s your sibling, and you love them– it’s as simple as that. I think that was true of most kids, not just us siblings; difference is not a problem until you reach a certain age. For me, also, I hadn’t gotten to know any family other than my own yet, so I didn’t have a reference point to know that we were unique.
Alex: Indeed Kirsty, I totally understand what you mean. We are just born with it, no judgment, and thinking our lives are as normal as the rest! For me, growing up with my older sister was just part of my life. Normality one could say. Something you don’t truly grasp in your early years until others start pointing it out. When I was a child, I remember not being initially conscious of these differences. However, as I grew older, you begin to perceive them, especially the varying attention levels received by my sister. In time, I realized I was maturing at a different pace than my older sister, and that caused me to mature a lot faster.
I often found myself comparing my situation to my friends “why were the older siblings of my friends protective, while I, the middle child, felt the responsibility of protecting both my younger and older sisters?” I had to adapt to the realities of life quickly because my sister attended the same school as I did, which unfortunately meant encountering unkindness from other children. This experience left me questioning whether it made me weaker or stronger, but one thing is certain—it was a distressing experience. My childhood differed significantly from what one might consider “normal” because I had to step in and protect my sister from those who failed to understand her and, rather than trying to empathize, chose to target her and, in the process, me as well.
Kirsty: Absolutely, Alex. I completely agree that it was other people who made me realize that disability, and thus my sister, was not accepted by most people beyond my family unit. Even when you aren’t actively protecting a sibling from bullying as you had to, you still begin to understand that the world around you was not made for people with disabilities, whether it’s from inaccessible front doors or unpleasant interactions with strangers. But, since I had yet to find the language for these concerns or questions, I was left feeling isolated in my experience.
Transition to Teen Years
Alex: For me the years before my proper teenage years — so before I started high school (15) — were my most difficult ones. During that time, I started doing typical pre-teenage things like going to the movies or visiting friends’ houses. However, there was a unique aspect to my social life – my friends were aware that wherever I went, my sister would come along too. It wasn’t my choice but rather a decision made by my parents, and it created a challenging period in my life that occasionally led to resentment toward them.
Then, as I entered high school, there was a huge change in my life. My parents made the decision to enroll my sister in a special education school. It marked the first time I didn’t have to constantly worry about bullies targeting my sister or fearing over her being alone in the playground. One vivid memory remains etched in my mind, haunting me even now. There was a particular day when I chose to join my friends in the playground, rather than staying by my sister’s side, and the image of her playing alone from a distance still lingers. While I understand that I shouldn’t blame myself, there are moments when I haven’t fully forgiven myself for that.
This shift allowed me, for the first time, to focus on myself. I could savor my free time, knowing my sister was in a secure environment, and I could simply be me. High school is often regarded as the worst time in many people’s lives, but for me, it was the best (aside from the typical acne, of course).
Kirsty: Thank you for sharing that. I know that all of us family members– and probably all people, to be honest– have memories of times like yours that we wish we had known better, or acted sooner, or been stronger; I definitely do. I just try to remind myself that all we can do is to be that person moving forward, both for our sisters and in our lives beyond.
My teenage experience differs from Alex a bit, but definitely sits with me still just like hers. Since my sister and I were separate at school, and my parents always did their best to keep my independence intact, it was not my family members that I came to resent, but the world around us. There was cruelty from some, absolutely, but it was predominantly not acts of malice, but acts of ignorance, that chipped away at me. As my sister navigated the public education system and social situations, I was often left confused as to why others did not understand her brilliance, and angry that they did not make the effort to even try. I learned to assume the worst of people, keeping the world at an arm’s length from my family in attempted protection. This time in my life gave birth to my passion for social justice, which I am so grateful to have found as early as I did, but it also created an emotional distance between me and others– often, my family included, as I tried to avoid becoming another worry on the already long list. I am still working to bring down the walls that I built, but talking truthfully about our experiences as we are now helps with that.
Alex: Kirsty, thanks for sharing with us. I know that revisiting the past can be quite emotional. Now, I’m curious, how are things going for you and your family these days?
Adulthood: New Horizons
Kirsty: Now that my siblings and I are all grown up, my family runs quite differently. Thanks to organizations like Our Normal, I’m more aware of how my upbringing was impacted by inaccessibility– after all, that’s why I’m helping write this article. My family is able to have more candid conversations about how this inequity continues to impact us, and think about what that means for the future. I hope that all siblings are able to have these kinds of conversations when they are ready; I promise you that the worrying will happen anyways, so it is important to work through it as a family.
Alex: It’s nice to hear we aren’t the only ones then! We also now have more difficult, but necessary conversations, where my little sister and I can be more open and understand our emotions better, and talk openly to our parents.
Kirsty: I love that, Alex. My sister is still my best friend, and always will be. I’m lucky enough now to have friends who see beyond her disability as I always have, and engage with my family just like any other. Circumstances changed when I went away to college, with Friday movie nights becoming long FaceTime calls, and were forced to shift once again now that I’m on the other side of the world. I would give anything for my sister to be here with me, or to trade places with her. That is a guilt that I know many of us siblings carry, and probably always will. Nonetheless, I am able to keep going on this journey because I know that my family wants me to have the entire world, even though that world was not made for families like mine. Plus, my sister gets to start a new postcard collection.
Alex: I 100% agree. I think now we are wiser and choose the right people to surround ourselves with. After all these years and difficult times, my family has always been, and continues to be, the most vital aspect of my life. I’ve set a high bar for the people I choose to be friends with – they must be comfortable around my family (because let me tell you, my mom is a character), but particularly my sister. If someone doesn’t know how to interact with her, it’s a significant red flag for me. To me, this is an essential element of life.
Also, now at 26 years old and a recent graduate, I’m navigating the transition to taking care of myself. It’s a challenging shift, having spent my entire life looking after my sister. My younger sister and I are embarking on our own journey, while our older sister observes us moving forward, which can be tough for her. This, I believe, is the most challenging aspect of our family’s journey into adulthood, and that causes all of us to worry and somehow pity her which we shouldn’t.
A Shared Journey: A message
Kirsty: When people talk about siblings of persons with disabilities, the dominant narrative is one of struggle: that we receive less parental attention, adopt caretaking responsibilities from a young age, and overall, just grow up faster than our peers. It would be disingenuous to suggest that these parts of being in a disabled family aren’t true; my sister’s needs did come first, and that relied on all of us– siblings included– to ensure that they were met. I learned to adapt my expectations and adopt new responsibilities, and to look out for myself during times in which my parents had to look out for her.
With all of that said, I am so proud to be a part of my family, and know that I am better for growing up alongside my sister. I am more caring and empathetic to all people, not just the community with disabilities. I learned how to be independent while recognizing the importance of supporting others. As I mentioned earlier, my early exposure to inequity has led to a lifelong passion for social justice, fighting for families from marginalized identities like or unlike my own. And, I get to meet amazing people like Alex through our shared experiences, and know that both me and my family are a part of a community much bigger than ourselves.
Alex: One has to understand that encounters with people like Kirsty are profoundly eye-opening. Despite living across an ocean from one another, our lives are remarkably similar. Conversations with someone who has experienced the same challenges are not only refreshing but also reassuring. If I had friends in similar situations when I was younger, life might have felt less burdensome, as I would have known that I wasn’t alone in this journey. We embrace independence at an earlier age than children untouched by the concerns that come with growing up with siblings like ours. While most kids begin to worry about life’s complexities in their teenage years, for us, those concerns come up as soon as we recognize that our siblings require ongoing care and protection, and will have to in the future.
Oh god Kirsty, the FUTURE. I think that is one of my biggest worries, and I constantly think about it. I am already planning that in my house there will be a room only for my sister.
Kirsty: Oh, trust me, Alex, I know! There is so much uncertainty– we can’t know what our family will be, let alone what the larger disability landscape will look like. But, we both definitely know that our sisters will be a part of that future, and with that, so will a level of responsibility for supporting them. All we can do is plan as much as possible, and then take it day by day after that.
Alex: I think we agree here Kirsty, that we perceive an imperfect world – a world that poses inherent dangers for our sisters, and that the future is as imperfect and unstable for them. However, with the right knowledge and meaningful changes, we can transform this world into a safer, more inclusive place for people like Kirsty’s sister and mine. Simple steps, such as companies adapting their services, products, or organizational culture to embrace universal design, can have a profound impact on the disability community. In addition, it’s essential to educate your children to embrace differences and diversity. Bullying, whether directed at anyone, inflicts psychological and physical harm. It is unjust and inhumane. Teach your children the values of kindness, empathy, and protection for those who may be more vulnerable. If these values are ingrained from a young age, they will grow into adults who are more accepting of differences.
Kirsty: And, for all of the siblings reading this, just know it’s going to be okay! Lean on each other, learn from each other, and know that you have an entire community behind you. We’ve got this.