My name is Brendan Downes, and I work as a Patient Advocate for 180 Medical. Part of my job involves getting to help support kids with spina bifida and their families. As an adult with spina bifida, I’d like to share a bit about my perspective on gaining independence with a disability.
What Does Independence Mean?
First, what is independence? While independence can mean different things to different people, we can all generally agree that independence involves being able to take care of yourself and your own needs. Also, it may mean assuming responsibility for your own life. To me, independence also means mastering different life skills.
Finding independence is one of the most rewarding feelings as a young adult. We all reach independence at different stages in life, but it’s one of the significant accomplishments for which young adults strive.
For a person living with a disability, this can be one of the most challenging and daunting tasks in life. We may even think it is insurmountable. After all, if independence means taking care of your own needs, those of us with disabilities often have a longer list of needs than our non-disabled family or friends.
In my first blog about growing up with spina bifida, I wrote about how unique and challenging it can be. I think that also applies to the process of gaining independence with a disability. However, as the quote by Joshua J. Marine says: “Challenges are what make life interesting, and overcoming them is what makes life meaningful.”
Taking Care of Your Own Needs with a Disability
While having a disability may create more challenges than others face, it’s good to remember that every day of our lives will bring new challenges. You’ll encounter things you need or want to accomplish. In all reality, it’s best to learn early on the various ways we can go about achieving those tasks. Ultimately, I believe that the sooner we can begin learning how to perform tasks on our own, the better.
When you live with a disability like spina bifida, then you will need to learn new skills that your non-disabled friends or siblings may not. For example, you may have to learn to manage your skin care routine, exercise routine, or your bowel and bladder routine on your own, such as learning the basics of intermittent self-catheterization.
I was handling my own self-cathing regimen by age 5 and bowel management by around age 9, so these skills can be gained at an early age. I’m sure if you ask my parents, it wasn’t the smoothest transition. At first, there was definitely a process of trial and error. Plus, I needed a lot of regular reminders from my parents. Nevertheless, it was attainable for me at that age. Over time, I was able to become fully independent by learning those skills early on.
Not only are these skills instrumental for gaining independence, but they are also paramount to ensure you maintain your independence. If you do not take care of yourself by managing the various self-care routines you need to protect your health, then independence may not be attainable for you. Some people with disabilities will require some sort of consistent help, but that doesn’t mean you cannot also experience a level of independence.
A Parent’s Role in Encouraging Independence
When I was younger, my parents did everything in their power to encourage me to learn how to become independent. Parents and caregivers can do this for their children, too, depending on their level of disability. My parents started me out at a basic level, then helped me progress when the next level of learning became appropriate.
For example, they helped me learn how to handle my own laundry. My bedroom was on the second floor, and the washer and dryer were in the basement. So my very first task was to learn how to bring my laundry down to the basement and sort it. Since I am unable to walk, this required me to figure out how to safely carry my laundry basket. Admittedly, I had to learn through making some mistakes through the whole process, but gradually, I got to learn more tasks, such as learning which cycles to run, where the detergent goes, not forgetting the dryer sheet, and learning to fold my laundry.
My parents helped teach all this and more to me before high school. Was it easy? No. Wouldn’t it have been faster and more convenient to have a family member take care of my laundry? Of course. However, when you’re at college or living alone, you won’t have that luxury.
My mom always told us, “One day, we won’t be around to help you, so you’re going to learn how to do it today.” To me, that sums up the long-term approach and planning that gaining independence with a disability can take.
Levels of Independence with a Disability
One important note I want to make is that not everyone’s disability is the same. Therefore, there are no cookie-cutter routes for gaining independence with a disability.
Some of us may be able to accomplish more on our own. Others of us may need a caregiver or a personal care assistant in our lives. However, you can likely still learn to do specific tasks independently.
Even if we require some help, it is imperative to learn what works best for you individually. Plus, independence can also mean advocating for yourself, such as making sure tasks that others do for you are accomplished in the best way for your needs.
Time and Effort
I touched briefly on several daily skills that have impacted my life the most, although we could talk about countless others, such as nutrition, hygiene, driving, cooking, etc. However, what I think is most essential to recap is that this all boils down to two things: time and effort.
Ultimately, if you put in the necessary time and effort, you will eventually find the best way to make your life as independent as possible. Although once I was a child who needed help for a lot of things, I am now a completely independent adult traveling the world with my wife and daughter. If my parents had not encouraged me on the path to independence, who knows where my life would be at this point?
I hope you put in the time and effort for yourself or your child. In doing so, your or their true potential for independence can be maximized. Albert Einstein once said, “In the middle of every difficulty, lies opportunity.”
What opportunity can you grab by rising to a challenge today?