What Independence Means to Me as a Person With Spina Bifida


As a person who has been disabled my entire life due to spina bifida, I have found I have a different idea of what being independent means to me. I have a lot more friends who have become disabled due to injury than those who have been born into it. As I have spent time with my friends, I have noticed they seem to be adamant about doing things on their own. They will even struggle to do something when help is nearby and could easily be acquired to make the task much faster and easier.

Don’t get me wrong, I am all for doing everything I can on my own, but I also believe that part of being independent is knowing when you need help. I sometimes wonder if people who are injured and go to rehabilitation are preached to so often about being independent that it becomes ingrained in them that they shouldn’t ask for help, no matter the circumstances. I believe this thinking might hurt as opposed to help people. If someone feels they need to do everything on their own and are unable to ask for help, they may decide not to try something in life just because they can’t quite do it on their own.

I am a member of an adaptive ski race team, and the coaches often push us to be as independent as possible. After all, we are supposed to be high-level athletes if we are competing in a sport. I definitely agree we should try to do things on our own, but I also think sometimes there are instances when getting help is safer and wiser. For example, riding the lift by myself, which I have done and am capable of, seems like a bad idea. If something should happen, I have no one there to assist me. If there isn’t anyone to ride with me, I can do it, but I don’t think it should make me seem less independent if I get assistance.

Another instance happened when I was stopped at the bottom of a hill in my ski through no fault of my own, and I asked for a push to the top to save my shoulders and arms. I knew I would be skiing the rest of the day and the next day and didn’t want to risk wearing my arms out and missing practice time. There was an able-bodied person there to assist, so I took the assistance. I was told I should be able to do it on my own if I am on the race team. I can do it on my own, but I chose not to for the reasons I explained.

When someone is telling me I should be doing everything without assistance, I want to ask them about their own life. Have they done everything on their own, or did they have help to get where they are? Have they never asked for help carrying groceries or taken their car to a mechanic to be fixed? Everyone needs help now and then, and we should all feel empowered to know when and where we need help and when we don’t. It should be our decision to ask or not.

I would not have had some amazing experiences in life without asking for help. I have reached the summit of El Capitan and Washington Column in Yosemite National Park, Cathedral Ledge in New Hampshire, completed marathons in my racing chair, skydived and learned to fly airplanes. Throughout all of these achievements, it has taken tremendous help for me to get to the end goal. I have had friends guide me up rock faces and carry me back from the summit, I went skydiving tandem, I had an instructor teach me to fly and a coach help me train for racing.

I know there is a time and a place for helping and for allowing a person to figure things out. But I believe we should allow the person struggling to make that choice. I have been offered help many times and turned it down because I was doing something I knew I was capable of doing. I have also accepted help when I knew that getting to the end goal was more achievable.

I believe if we all worked together and helped one another, the outcome would be greater than if we all stay individuals and fight the current of life alone. When we all come together with a common goal, great things can be achieved.

My hope is that we can encourage one another to lend a hand when needed, but also have the choice to go our own path when we desire.

I would love to hear others’ views on what independence is to them, and stories of when they got help or when they didn’t need it.

Follow this journey on Go Beyond the Fence.

We want to hear your story. Become a Mighty contributor here.

JOIN THE CONVERSATION

Related to Spina Bifida

Grandmother and granddaughter.

The Lesson From Granny That Still Guides My Life With a Disability

2017 is a very exciting year for me, but goodness has it started on a low, having lost an incredibly special member of our family. My Granny recently left this world, aged 90, after a 10-year battle with dementia – she fought a very good fight and is now at peace, no doubt drinking some [...]
Enock skiing.

Why I Say 'Yes' to Challenges in My Life With Spina Bifida

As a person living with spina bifida, challenge is part of life.  Although people may see me in a wheelchair and think I have it harder than others, I think everyone has challenges in life. It’s how we face them that really matters. I could just as easily have said “I don’t want to deal with [...]
Enock climbing Cathedral Ledge.

Why I Love Rock Climbing as a Person With a Disability

I was born with spina bifida, which left me unable to move my legs. I have used a wheelchair as my mode of transportation my whole life. I lived in the woods in northern Maine, so I spent a lot of my growing-up years in the outdoors, either hunting and fishing with my dad or [...]
Wheelchair with boots.

Why Holiday Shoe Shopping Is a Challenge for My Daughter With a Disability

“If the shoe fits, wear it.” That’s not the sound of me throwing around cliched moral judgments. That’s the sound of a mom who has spent way too much time looking for a holiday party shoe that will fit her daughter’s foot. Shoe shopping can be difficult for people with disabilities such as spina bifida, [...]