Answer by Kimberly Domangue, communication grad student and psychology buff:
What’s it like being in a wheelchair? It’s a mixed bag.
Seeing someone in a wheelchair often brings out the best in people. People want to be helpful and accommodating. Of course, this is not a universal and works best if the wheelchair user is nearby in plain view. I have been pumping gas and have had strangers stop me and say that I inspired them. I’ve been given gifts by strangers.
Tons more people remember me than I remember them. It’s like a low level of fame. It also becomes your defining characteristic.
“You know Kimberly?”
“No, I don’t think so.”
“She’s the one in a wheelchair … ”
Little kids find your wheelchair incredibly interesting. It makes you smile, because kids are just awesome.
There are still places for which the Americans With Disabilities Act, or ADA, is just something a baby might say. (Some interesting stories there.)
Before I used a wheelchair, I walked with a limp most places. (I was born with spina bifida.) My mother was angry when I began using a wheelchair in high school, because to her it was like I “gave up.” Really, I was just happy to be able to go anywhere I wanted and not worry about getting out of breath too quickly, falling, or being utterly exhausted. My plans became the center focus, not my muscles and aching body.
When you’re an adult in a wheelchair, with the life of a competitive graduate student and breaking into the workforce, you have a different worry when the rough patches come: when your dating prospects are slim to none; when you’re unable to find something for a boss while you have the flu, and he sets you up to work elsewhere saying that perhaps you just need a less strenuous job; when you have excellent conversations with classmates you see every day in class, and they plan some fun event in front of you and never ask you to come along …
You wonder sometimes. You wonder how many opportunities you might have missed out on because some people didn’t want to bother. You wonder if people just see you as a bit too much trouble, or an inconvenience, to their ways of doing things. If they see you as someone they admire but not enough to be on the same par as they are. You wonder if it’s instead just awkwardness and not knowing what to do with someone a bit different that pulls them away. You wonder if it’s there at all, because everyone was so nice to you, so you’re just overreacting.
And as visible as you might be in some ways, to some people, the truth is that not a lot of people know what it’s really like to be you, in that chair, with all the extra things you have to think about and do. Some people probably do resist offering you an opportunity, asking you on a date, including you in their social circle because of the extra baggage you carry.
But I guess that’s true of a lot of other people, too.
* * *
Answer by Virali Modi:
Positives first, as always!
- I can do wheelies. (Do I need to explain?)
- I can run over people “by accident.” I’m really sly, aren’t I?
- I get to work out my upper body by pushing myself—probably more than I used to before I became wheelchair-bound.
- I get to cut in line because I’m in a wheelchair. Who gets to ride roller coasters first? ME! I don’t have to wait in line! (Seriously, I go-kart and ride roller coasters, even though I’m paralyzed.)
- Emotionally, I have a lot of people who look up to me, because I’m so happy and positive even though I can’t walk. Who said it’s the end?
- Particularly in India, people take me for granted. They think of me as “poor little Virali—she’s in a wheelchair, she’s going to be easy.” What do I mean by easy? I mean to get in my pants easy. I’ve had so many men try to flirt with me. Don’t get me wrong, I’m a flirtatious person, and I like flirting. After a little bit, they’d start talking about sex and all the dirty things they’d like to do to me. Why? Seriously, why? Do I look easy to you? Am I wearing a sign that says, “Come have sex with me—I’m paralyzed and easy”?
- Emotionally, no guy ever wanted me, romantically or to fall in love with me. They thought that dating someone in a wheelchair is hard stuff. Why on earth would someone date a woman or man who’s wheelchair-bound? It’s honestly not that hard.
- I got used a lot. This is related to my wheelchair, I suppose. Just because I can’t walk, people would ignore me when making plans to go dancing or maybe even just go for coffee. The place probably isn’t accessible, or they think What would a girl who can’t walk do when we go clubbing or dancing? Honestly, I dance better than you, and I’m only moving my upper body.
- Some places in India aren’t accessible. Do the politicians give a damn about accessibility for handicaps? No. There is a compartment in the local train for handicaps, but there isn’t a ramp of any sort for wheelchair-bound people to get in, at least none that I know of.
- In India, locals stare at handicaps. Are we a circus act? Is it wrong or taboo to see a gang of us at malls? But then again, there are a lot of nice people, too. It goes both ways.
- People also don’t think that I’m capable of doing anything other than being a pretty face, mainly because I’m in a wheelchair. I’ve achieved more than them while sitting in one chair for eight years.
- There are some surfaces that are hard to travel on—for instance, loosely packed dirty, snow, and sand. It’s really hard for someone to push the wheelchair on those particular surfaces, let alone me. There are different types of wheelchairs that are available to help with such things.
- Another thing that I initially didn’t mention is urinary and bowl issues. Some people with neurological problems are faced with difficulties using the bathroom because they lack sensation or muscle strength to control such issues. I myself use a catheter for my bladder, so I don’t have to worry about going to the bathroom in inaccessible places, especially in India. I guess this is a downside of being in a wheelchair, as well as having a neurological problem.
Being wheelchair-bound is definitely a challenge and something one has to deal with, but it does not mean accepting the condition you’re in. If I did that, I wouldn’t be here typing this, or I wouldn’t have been so positive and happy throughout these eight years. Accepting myself in a wheelchair is considered a failure to me. I view this wheelchair as a challenge for me to get out of it and do good for the people who deserve it.
More than anything, I do believe that living life in a wheelchair is difficult but not impossible. A positive attitude and a smile through tough situations is needed and definitely encouraged. I believe that a handicapped or disabled person is not disabled or handicapped. Disabled or handicapped are sociopaths, psychopaths, murders, rapists, and/or people who lack sympathy, empathy, courage, love, sensitivity, and passion.
What does it feel like to be in a wheelchair for me? Easy. It feels easy yet challenging at the same time. I hope, by next year the same time, I would be writing a post on my blog about how I have achieved to get this wheelchair out of my life.
I’d also like to add that people who are in wheelchairs due to neurological problems are more sensitive in terms of sensation and movement and need to be extra careful of their skin on their buttocks. It’s prone to skin break or the skin ripping from too much pressure and moisture that it reveals the muscle or even the bone. Luckily, I have never had to go through that.
Because of neurological problems, people have spasms, or involuntairy movements of the muscles, which causes a jerk in the particular muscle or group of muscles. These can be quite painful for the patient or someone around them. They vary and can happen at any time of the day. Without proper calcium or vitamin D, it is possible to break a bone, just like I did. I fractured my right femur because of a spasm. I now take anti-spastic medicine to calm them down. I stopped taking the medicine about three months ago, and my spasms aren’t that bad now.
Psychologically, I wanted to add something here. I have lots of friends who are wheelchair-bound who live in India. Mentally, they are weak. They don’t have the courage or the heart to get out of a wheelchair, and that really irritates me. I, being a really positive person, also have days where I get upset about being in a wheelchair. It hurts sometimes, mostly because people only see the wheelchair and not you. The reason it irritates me is because I can’t be a negative person and accept my situation. Many say that we get treated really nicely—that can be good and bad.
I don’t mind being a unique person, different from the rest, but sometimes I’d like to be normal, and I’d like to do everything a normal person can—and mind you, I do. I do almost everything as normally as you, the “healthy” human being. The only difference is that I take the elevator or the ramp, while you take the stairs. My ability is astonishing.
Just to give you a few examples, I travel in a rickshaw all over Mumbai alone, without any assistance. I don’t know anyone who is in a wheelchair that does that. It’s damn hot in Mumbai; it usually gets above 80 F (or close to 30 C). It usually takes me about 1.5 hours from my home to my therapy place, with traffic. My therapy center is only about 15 minutes away without traffic. I travel alone and pick up vegetables or any other food that is required at home in the terrible heat. I’m more independent than most wheelchair-bound people. I exercise a total of eight hours a day—four at my therapy place and four at home—and I meet up with friends and even go out for dinner or drinks, and get time for Quora. I cannot stand it when people give me excuses that they don’t have the time to exercise or take care of their health.
Like I mentioned, living life in a wheelchair is not at all impossible—it is challenging, but possible. Sure, maybe your certain illness or neurological problem won’t be cured whatsoever, but the least you can do is become more independent. You’ll learn that at therapy and while practicing it at home.
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