I know you worry about your non-disabled child.
Are they one day going to have to take care of their sibling? Can they go off and live their own life? Are they going to have to sacrifice all the same things you did?
That’s a lot of weight to carry, so hopefully I can lighten the load for you.
Growing up with a sister who has a disability has created a lot of purpose in my life. It has greatly contributed to my career aspirations. And I don’t fear the possibility of one day taking care of her. I know, from my own experiences, that non-disabled children truly can live a wonderful life with their disabled sibling.
When I was a teenager, I started to find purpose in life as a result of my sister’s disability.
I started taking care of my mom and our house every time my sister would go back into the hospital. I’d make sure my mom had plenty of chocolate and a book to read or sudoku puzzles to solve. I’d make sure to take care of the dishes and the dog at home. Taking care of my mom and the house let me help at a time when the only thing we could do for my sister was wait. It was really important to me to feel useful and helpful during these times.
I also found purpose in being a caregiver. In my last post, I mentioned that becoming a caregiver improved my relationship with my sister, but it did a lot more than that. Working with other people as a caregiver helped me decide that I wanted to work with people with disabilities for my career.
In college I decided to take classes in Disability Studies, which completely changed my life.
The first day I walked into class there was a guy in a wheelchair near the back of the room. I thought it was cool we actually had someone with a disability taking the class. That is, until he went up to the front and introduced himself as the professor! That was my first of many lessons about perceptions of people with disabilities.
This class took my sister’s disability, which I had been brought up to see as an awful, bad thing, and turned it into something normal. All my life I’d been told that disability was bad and tragic. I was told that people should be cured of disabilities by medicine. And I had abandoned religion in part because I couldn’t make sense of God being benevolent and making horrible things such as disability happen.
This class taught me that disability is a normal part of the human experience. It taught me that people with disabilities are whole, unbroken human beings that have inherent value and don’t need to be fixed. And it taught me that a lot of the “suffering” around disability can actually be solved through improving people's attitudes towards disability, increasing accessibility in the community, and fighting for the rights of people with disabilities.
As a result of taking disability studies, I became a revoicer for my professor, minored in disability studies, and joined an accessibility club on campus. With that club, I developed a scavenger hunt to help raise awareness of accessibility issues and helped create the first Disability Awareness Week on our campus (which has now developed into a whole month)!
This class truly sparked my passion for disability rights issues. These experiences immersed me into the world of disability allyship and advocacy and guided me on my path towards finding my true purpose in life.
My sister and her disability have also had a huge impact on my professional life.
As you read in my last post, I’m now a pediatric physical therapist because I loved watching Morgan’s therapies. I thought it would be so much fun to play games with kids and help them improve their motor skills as a job. And that PT I mentioned, the one who would tease the OT in the hallways saying, “No, Caitlin’s not going to be an OT, she’s going to be a PT!” became one of my clinical instructors during my internships!
Also in PT school, I actually got to work on my sister’s wheelchair in my wheelchair seating course. My instructor took me though the whole process of evaluating her posture and current chair, trialling new backrests, ordering a new one, and then finally installing it! I can certainly tell you that no one else in my class got to work on their own sister’s chair.
My experiences with my sister were also a big factor in me starting Disabled and Successful. I grew up watching people treat her differently and not have access to all the same experiences I had. Combine those experiences with my education in disability studies, and my observations of parents as a PT and I had all the motivation I needed to start Disabled and Successful. Without those experiences, I know I wouldn’t be running Disabled and Successful today.
Despite how important my sister is in my life, it’s difficult to maintain a close relationship from so far away.
I don’t live close to my family anymore. They’re a plane flight away, so I can’t just drive over there. As a young adult finding my own footing in life, I needed that distance. But now, it makes staying connected to my sister difficult.
Morgan will talk on the phone or FaceTime with me for a few minutes here and there, but that’s not really how she relates to people. She much prefers to give me back-cracking hugs, wrestle me to the ground, or poke me over and over again while saying, “bug, bug, bug, bug…”
These are the ways that my sister relates to people. As a result, it’s very difficult to maintain a close relationship from so far away, but we do our best. She was a bridesmaid in my wedding last year, which was so much fun! She loved getting dressed up and dancing and flirting with all the boys. We also try to visit each other at least once a year, and hopefully (fingers crossed!) we’ll get to see each other on our family trip this coming February to New Orleans and the Caribbean.
Despite the difficulty of maintaining a close relationship right now, there is the possibility that I might one day become her guardian.
If anything should ever happen to my parents, their will passes on guardianship of my sister to me. They asked me when I was younger if I would want to be her guardian and I said yes. Honestly, I wouldn’t want anyone else to be her guardian. I want to be there for my sister if anything happens to my parents.
To make a quick distinction, according to my parent’s will I would be her guardian, not her caregiver. This means that I would be involved with and sign off on any decisions in Morgan’s life, such as where she lives, who’s taking care of her, medical procedures and medication changes, and managing her finances. This doesn’t mean I would need to physically take care of her day to day, but I do have the choice to do this if I desire.
The main point I want to make is that I don’t fear becoming my sister’s guardian. I’m confident that, if this does happen, I’ll work with her to help make the best decisions for her life, whether that means moving in with me, or finding her a place to live near where she is now. I also know that, if she ever does move in with my husband and I, that we could invite her into our household and create an environment where she can do what she wants with her life while also creating the lives we want for ourselves.
Do I know exactly how all this will look if it ever does happen? Definitely not! I know there will be a lot of work involved though: paperwork to fill out, finances to manage, symptoms to watch for, medications to manage, all sorts of things. I know it will be messy and chaotic and surprising. But I am confident that my sister and I (with the support of all the other people around us) can figure it out and do what’s best for the both of us.
It truly is a wonderful experience to have a disabled sibling.
I know you may worry about your non-disabled child, but having a disabled sibling can provide them so many wonderful gifts. If they’re anything like me, it can provide them with purpose in life, a wonderful friendship and a meaningful allyship. Also, if they do end up being a guardian or a caregiver for their sibling, they can still live a wonderful life.
Non-disabled siblings truly can live a great life with their disabled sibling.
I would love to hear from you: Do you worry about your non-disabled child one day having to give up their own life to take care of their disabled sibling? Let me know in the comments section.