I wanted to get on here and discuss a few things that have been on my mind. Recently, I was asked the question, “what are some of the most frustrating parts about life in a wheelchair, and what’s the most helpful thing for people to do?” After mulling it over for a few weeks, here’s my response:
If you want to “help” someone in a wheelchair, just stop trying to “help”. We don’t need it. Here’s how you can help. Talk to us. I promise it goes a long way if even one person starts a conversation, about anything. Feel free to ask us about our wheelchair, what it’s like and what we go through. Personally, I enjoy when people ask me about my wheelchair, because, as much as I used to hate it, it is in fact a part of me. To me, someone asking about my wheelchair is no different than me asking where you got your shirt, or if your hair color is natural, or even if the scar on your left knee is from surgery or an injury. My wheelchair is a birthmark, as I’ve been bound to its fate since birth. So don’t pretend its not there, or an entire conversation will just be us awkwardly dancing around the obvious.
But, there does come a limit. Once we’ve established I’m in a wheelchair, don’t egg on it and don’t let it dictate our entire relationship. My blog is titled “A Girl and her Wheels”. They aren’t with me and I’m not even going to call myself the girl in the wheelchair; not because I deny I’m in one, but because it is not my identity. Now granted, I know that if I’m going to be described to or by a stranger, the go to description will be the girl in the wheelchair, and do I take offense? No. We all know it’s there, so why not use it? But I know myself, and I am with my wheelchair. We are partners, and it is an entity, but it is separate from me.
My family always raised me to never let my wheelchair claim my entire life. For awhile, it was hard not to. To grow up seeing the other kids run around in the grass and play soccer and go wherever they wanted, whenever they wanted, I won’t deny it took a toll on my confidence and mental state, as much as I tried to not let it, but I’d like to think that I was blessed as a kid to be an extreme introvert. As much as I thought I would’ve liked to play with the other kids, looking back, I know it wasn’t my time. If anyone reading this is a young kid struggling with being an extroverted person in a wheelchair, I promise there are people out there who will realize there are ways to hang out and be friends with you. It may take a while and it may not, depending on your personality, but in this world, you are competing with the wheelchair, to shove it to the side, refuse to let it take center stage, and show the person with the chair. It takes so much bravery, and boldness, but it starts with never denying it is there. Let the chair empower you.
How do you do this? It varies for everyone. Some people deck theirs out and design it any way they want, like putting on makeup or getting a tattoo. Others, get autographs from a celebrity they may have had the chance to meet. For me, my empowerment has come from talking about it.
There are two distinct places I’ve been given the chance to speak up about my wheelchair the most: at my workplace, and at the mall.
Most commonly, when I get the questions at work, it comes from the young kids. They run up to me, their eyes lit up with excitement for their movie, and then they see me, and their faces go blank. After a few moments of contemplation, they very bluntly ask me, “What happened to your legs?” I’ve mentioned it before in my first blog post , but I’ve stopped shying away from the question, and used it as a chance to educate the rising generation. Only then can we hope to raise a more tolerant youth, and a more peaceful world. Simply taking a look at our society and world today, violence and anger can come from a lack of understanding from either party. The blessing that I feel I was bestowed with was the ability to make people understand, and stop the common myths people today still believe about people with disabilities. I can see it in the eyes of the parents of these kids who ask me these questions, as they pull their kids back and whisper, “Honey, we don’t ask those questions” as if I can’t hear them. I know they are trying to help and don’t want to offend me, but by not asking we risk building a wall (too soon?) between “normal people” and “disabled people”. I would like to think that a parent would want any opportunity to educate their children on people with disabilities, but the terrified looks I receive as the questions hang in the air, along with the hushed whispers suggest otherwise. In fact, I would bet that I get more stares from the older generations, and more of them trying to “help”, than from millennials and the younger teens and people my age. If we don’t educate at a young age, these kids risk growing up not understanding why some of us are like this, and may even get the impression that they should avoid us because we are fragile and don’t want to talk about it. So please, ask away!
I remember one instance I was at the mall, shopping in Forever 21, and this very young girl walked up to me with her mother and again asked, “Why are you in that (the wheelchair)?” Her mom instantly got on her level and started to say the typical response of “don’t ask that” as I began to respond, saying my legs didn’t work and I used a wheelchair to get around. I showed her the light up wheels and told her it was pretty cool, and she smiled, satisfied and her mother led her away. I laughed quietly at the mother’s response, and yet a few moments later, the mother came back, her daughter in tow, and forced her to apologize for asking. Why should a young kid have to apologize for innocent curiosity? She was at the prime age of curiosity, and if my response wasn’t offending her, I wondered if by being forced to apologize she felt she’d done something wrong, and if her curiosity felt invalidated. No kid at that age should feel they aren’t allowed to be curious. Knowledge is power; power to fuel the future and empower those around us and those who have yet to come to never try and help, but to try to understand.
People will always say what they think needs to be said to glaze over the conversation of being in a wheelchair, and while I don’t agree with that as a method of “helping me” and “not offending me”, there were two instances where I felt it went further than just a little kid in the mall.
Once, in my younger and more ambitious days, I thought I could get into Stanford with a 3.7 GPA (and now looking back, I’m glad I didn’t get in). My dad took me to California, and we visited the campus. While there, we were given a chance to meet with the Department of Disabilities. I thought, great! They will know what I need, and we’ll be on the same page!” Well, while the woman was very nice and very encouraging, she said one thing that made me cringe for the world we live in. I don’t remember the context but she was trying to talk to me, and she began stuttering. She said, “I–I don’t know how to say this, and I don’t mean to offend, but as…someone in a wheelchair…” and she went on to speak about something I would need to do for college. All I could think was….DANG IT! Someone probably should have told me I was in a wheelchair!! Holy crap! I never would’ve known if she hadn’t just called me that! My life is ruined!!
Kidding. But the whole PC of not only her but of this world really needs to stop, because it can make something simple a whole lot more awkward….I’m in a wheelchair, I know it. Call it as you see. I. Don’t. Care.
The second instance was just plain awkward and I really don’t even know why it had to happen, other than people want to make it out that I’m the victim and that my life is such a struggle without ever really asking me about it.
I was in physics my senior year. I was working with my friend Gill, who I’ve mentioned in a previous post, and we weren’t getting anywhere, so she took her paper and her calculator up to the front of the classroom, of which I was already sitting very close to, and asked the question. When she returned and sat down, she proceeded to groan because she’d left her calculator at the front of the room (still only like 5 ft away), so I offered to get it since she had asked the question. I went up there, grabbed the calculator and sat back down. The teacher realized I’d only gotten up to get the calculator, and proceeded to stand up in front of the class and proclaim “You made the girl in the wheelchair get the calculator?!” (yes, she knew my name at this point), “She probably already has enough struggles in her life without having to march around getting your calculator!” and the whole class joined in booing and berating my friend. Looking back, I wish I’d spoken up more, but I stood up for her, saying that I offered to get the calculator, and I laughed it off.
Here’s what people can understand about me, and my personal life in a wheelchair:
- No, I don’t sleep in my wheelchair, I sleep in a bed.
- Yes, I can swim on my own
- I can date (boys hmu, I’m single)
- I ride in a car seat like everyone else
- I can drive a car if I choose to do so
- My IQ is not lower just because of my disability
- I can hold a job like everyone else
- I have a social life, and especially after my senior year, I’ve been able to do a lot of anything I wanted to do
- I can’t do everything on my own, but I will let you know if I need help with something or can’t do something
- YOU CAN DO ANYTHING YOU WANT TO!! You will have to find people who are willing, able, and want to help you with certain things (and I promise, you will) but I promise, your independence will come with age and as people around you mature, it can open a whole new world
Now, the second (or rather, first) part of the question asked, “what are the hardest parts about life in a wheelchair?” I want to answer both sides of that question, because as there is with most everything, there are good things and bad things.
- The chance to educate people
- skipping lines in Disney World, Theme Parks, etc.
- Forming Stronger relationships. While it can be harder at times to make friends, once you find the right ones, there really is no subtle way to introduce them to all of the different things that comes with your life, but if you allow them, the two of you can truly become such a strong support system. You may need to help with getting in the car, getting up a hill and even certain medical issues that arise.
- You don’t even have to walk everywhere! If you’re tired, someone can just push you!
- You get the big rooms in college dorms and hotel rooms
- You can get some pretty cool gadgets to help you out! Science gets better everyday!
- You aren’t just like everyone else!
- Constant UTIs and bowel issues
- Depression and anxiety can be more common
- Surgeries and painful procedures
- Harder to go out with others and be independent
- Clothes don’t look as good because Spina Bifida kids are typically wider in the thighs and rib cage, and exercise is tougher, so body confidence can be a challenge
- Dealing with flat tires that can be as limiting as broken legs
- There’s a lot more that goes into picking a college, and you may have to go with family
Please feel free to DM me on my Facebook or leave any extra questions or comments below on this topic or anything else! Remember: encourage the world to talk about disabilities, and be the voice for those around you. You can do anything! I promise.
Thanks for Reading!
Please Subscribe, Comment and Share 🙂