The world is full of well-intentioned people. I try to remember that. I really try to remember that. Understanding that an offer of assistance is packed full of good intentions helps me keep a smile on my face and annoyance out of my voice when I politely decline. But seriously. Saving everyone else’s feelings while my self-worth steadily declines isn’t really working for me anymore. What I want people to understand is that every offer of help is a reminder that my disability is seen before I am. Every question of “can I do that for you?” makes me think that you don’t see my capabilities; it makes me think that you don’t see me as an equal. So please, see me! See that I am capable. Being in a wheelchair does not mean that I am helpless and lacking in self-sufficiency.
I’m naturally an incredibly anxious and cautious person. So please believe me when I tell you that I have zero qualms about asking for help when I feel I really need it. I have no desire to injure myself in the process of trying to prove that I can do something on my own. My pride actually takes a much bigger hit if I end up on the ground than if I ask someone for help. I’m actually capable of judging when I can and cannot do something on my own. I may not have been in a wheelchair for very long but I’ve been in one long enough to know my own limitations and when I need to ask for help. Your best bet is to do nothing unless you are asked.
There is always someone who thinks they need to ask if I need help with anything and everything but, thankfully, those people are few and far between. For the most part, there are four common scenarios where I get the most offers of assistance: car transfers, hills or rough terrain, opening doors and reaching for anything that is not directly in front of me (and even sometimes when it is).
I understand that a paraplegic getting in and out of her car (with her chair) is not something that one usually sees every day. It looks difficult and a little bit awkward. But while it is definitely more work for me than it is for those of the able-bodied variety, there is satisfaction in having the ability to do it on my own. So please kind stranger, realize that I did not leave my house all alone without knowing how to get myself in and out of my car – that would have been very stupid on my part – and refrain from asking me if I need help. Please see that even though it is different, I am doing it and I am capable. Now, if you see my chair roll away from my car then your assistance would be greatly appreciated. Same goes if you see me on the ground because then, clearly, something has gone wrong.
As for managing hills or difficult terrain while in my chair, this is one of those times where I know my limits. If I am uncertain of my ability to push up a certain hill or get over less than ideal terrain then I will tell you. If I don’t tell you or ask you to stay close ‘just in case’ then please carry on as though you would with anyone else. Checking in on me unnecessarily highlights my disability and, again, makes me feel like the belief is out there that I am incapable of not only the physical task at hand, but also the mental task of knowing myself and my own parameters.
I can’t say I really mind when someone opens a door for me. It’s a kind thing to do whether the person you are opening the door for is able-bodied or physically impaired. I mostly just find it funny when someone goes obviously out of their way to get a door for me because they think I really need the help. I’ve seen people run (actually run) from behind me in order to get the door. Or they are opening the door for themselves and see me coming from a distance and wait for an obscenely long amount of time with the door open so as not to leave me in that unfathomable predicament of having to open a door myself. Like I said, this one mostly just makes me smile but it also emphasizes yet again how much people don’t understand about physical differences and the capabilities of those who have them.
When it comes to things being out of my reach, I’m kind of used to it! Being only 5’2” tall, I often had to ask for high-shelf assistance in my able-bodied past. Now I sit a couple of shelves lower which can be frustrating but it’s certainly not one of my biggest problems. With the level of my injury being around the bellybutton area, I have the ability to easily bend to the floor and anywhere in between to pick up whatever I need. This isn’t something that people easily understand but, even when they do, they are constantly picking things up for me (and I drop a lot of stuff). It is another small aspect where my capabilities feel invisible. But not only that, my theory is ‘if I don’t use it, I lose it’. If I don’t use the strength that I have to consistently move my body in the way that it is able, I will lose those muscles and flexibility. I want to keep any and all function I have left!
My family and close friends have mostly all learned to keep their helpful tendencies to themselves unless asked otherwise. When we are out in public this usually means that people look at whoever I’m with like they are a complete jerk because they are not helping me up a hill or with a door. But I’m okay with that. Isn’t that nice of me? Even so, if these strangers would take a second to ignore the fact that my companion isn’t helping me and notice instead that I am doing it unassisted, it could just possibly change those pre-determined opinions they have.
So here I am to tell you that I am capable. Please trust that I am self-aware and please know that I have the ability to ask for help if I need it. In most cases, the times I ask for help actually have nothing to do with the scenarios where people assume I need help. Most recently, my boys were refusing to get in my car after school because there was a wasp in the backseat. I looked at them out my window and asked them what it was they thought I was going to do about it. After opening the windows, my options were pretty well tapped out. I spotted a friend nearby and he saved the day by assuring the backseat was wasp free and child-friendly. Probably not the type of help most people envision me needing but I certainly wasn’t afraid to ask.
With all of the people that offer to help, there are also people who have never treated me any differently. They almost expect me to keep up and never suggest that they have doubts about my abilities to do so. The first time someone handed me their baby without hesitation I think I was more nervous than they were. You never want to be the person who drops a baby! It was through the confidence of these people that I started to gain my own self-assurance. Sometimes I think these people have too much faith in me but it pushes me to try and, most of the time, I succeed. If instead I fall on my ass then we laugh and figure out how to make it happen with a little bit of help.
There are times that I need help and I am okay with that. But please see me and not what
makes me physically different. Treat me as your equal. You can trust that I know myself and my limits and can articulate my need for help if it is required. And if you take anything away from my ramblings today then please let it be this: if you feel you need to help someone in a wheelchair, always ask first and always wait for a response. Helping someone when they aren’t expecting it could potentially cause an accident and an injury. Remember that even though the wheelchair thing is foreign to you, for the person in the chair it is familiar and they are experienced. Have faith that they can handle themselves and see them for their abilities and not their disabilities.
After this post went live I received a lot of feedback. It was mostly positive but not all of it. Please see my next post Reclaiming My Anonymity to hear my response.
I appreciate you sharing how you feel and I hope I understand what you are trying to say, but I want to let you know my view from the other side as a naturally-helpful person. I hold doors open for anyone behind me, I talk to strangers and I offer to help moms with kids, people with their arms full of bags, senior citizens or anyone that for that matter that appears to need it. I pick up items that others have dropped, disabled or not. My mind cringes at the thought of not offering help to anyone I perceive as to needing it (and yes, I realize now that is presumptive on my part). I can hear my mother in head chiding me for not doing it!
I was also very grateful earlier this year when I blew my knee out and I was struggling through the ice and snow on crutches, and people would hold doors open for me or assist me to my car. A few times I felt extremely frustrated when people would just let the door slam in my face, or watch me struggle across a parking lot, slip-sliding away and about to burst into tears. I know that was a temporary situation, and doesn’t equate to your unique challenges, but I feel most people are truly just being polite. It is a fine line we Canadians walk, between our helpful nature and our wanting to please others. Please don’t be too offended – they just may be doing it automatically, as I do! I will try to be more aware, and read body language as well as listen for the words.
Thanks for sharing Terri. I don’t mean to sound that I think the help comes from an unkind place. My mom is a person who will go into any situation and try and help. My goal in writing this was to bring awareness to the fact that the general perception out there is that I need help when I don’t. Like you said, perceiving that I need help is presumptuous so I wanted to make people aware that what they see as difficult is normal and common for me.
Personally, I prefer offers of help than guilty, furtive glances by people too stunned by their own fear and ignorance to know how to behave like a decent human being. I hate the silent stares, or the panicked “deer in the headlights” reaction some people get to encountering me in my chair – “oh my god, what should I say, and what if I do the wrong thing?!”
However, if somebody starts to move my chair, and me, without checking in for my consent, I consider that to be much the same as kidnapping, or even rape.
I agree. The awkward stares and don’t know what to do type glances are not fun. A friendly smile goes a long way to show that if I were to need something they would be open to helping. A big part is respecting boundaries and also just being more comfortable in these types of situations. Kindness is always the best option
Good info for me and all to have. This would be great to be in more of a public forum such as a newspaper.
Hi, as a lifelong person with a disability (full time wheelchair user since I turned 25 a couple decades ago), I may not come across here as nice as I want or should be. My apologies, sincerely. The last paragraph was great!
But what I want to scream out is “cultivate an attitude of gratitude, lady!” Your potentially discouraging exchange with someone may make them hesitate when they encounter me who’d love help up a steep hill but have no breath left to ask for assistance. My standard reply to offers of help not needed is : “I’ve got this, slow maybe, but it’s my routine. Thanks so much for asking though!”
If you really don’t want help, can you shop at off-hours so you can do your daily exercise without anyone’s well-intentioned interruptions?
I do hope your continued transition to being a wheeler goes smoothly; may you never be stuck in a grocery aisle waiting forever for a tall person to come by to reach something on the tall shelf for you.
I appreciate your comment. I feel like I have been a bit misunderstood as this post has gone out. I am not ungrateful. This post was written to make a point of capabilities and to challenge people who don’t maybe understand this wheel life to see more of what can actually be done. I am not a rude person and I understand that people are well intentioned. I was coming at the topic from a different angle to hopefully shine a light on the abilities that people have that may not be obvious. I believe a kind smile can go a long way in any situation between all types of people but that preconceived notions of ability can cause misunderstandings and we could take the situations to better educate and understand.
No offence taken from your comment at all. I promise you I appreciate people but, at the same time, what has gotten me through this ordeal is my independence. It is a big factor in me being my complete self and I want people to see that I have that in me.
Again, I had no intentions of offending 🙂
For someone who type-yelled about gratitude you seem to have a surprising lack of grace for others in their wheeled journey.
Not once in reading this piece did I sense or see anything that made me think Codi is rude to people who offer unsought-after assistance. What I read, what I felt, was a genuine desire to be seen for who she is not for what she sits in. All of us in wheelchairs deserve to be treated with dignity and respect. An able-bodied person who goes for doors for everyone is polite but if they were to walk up to another able-bodied person in the grocery and start trying to hand them boxes of cereal they are being rude. It is no less rude to do it to a wheeler.
The assumption of able-bodied people that those with a physical handicap are unable to do things is called Ableism.
My potentially discouraging exchanges with people I meet daily have everything to do with my desire to not be seen and treated as a cripple, unable to do anything for myself. My not wanting help should not mean I should shop at off hours and that you would suggest to another wheeler that any of us should just avoid on hours for doing what we need to do everyday to avoid someone assuming we are incapable is even more offensive to me than the ableistic assumptions of those who don’t live in this chair.
How dare you try to shame another wheeler for wanting to be treated with dignity! If you want the help of strangers, I suggest you wave that flag proudly on your own but do not attack others who don’t.
Hey, The Kintsukuroi Life, sincerely, thank you for handing me my tail as I hadn’t seen Codi’s reply yet before receiving notice of your reply. I think I might have been having a PMS day and should have stayed off social media. That’s no excuse; just acknowledging a wrong choice by me so I can do better next time.
Codi, thank you for your kind reply. It is very appreciated, too.
[…] thing is for me. This past week has been one of those weeks; I had to take some time to regroup. My latest post got some attention and, for the most part, it was all really positive. However this was the first […]
As a person who had a spinal cord tumour 20 years ago I am a part-time wheelchair user. In other words, going to the shopping mall or any long distance requires that I use the wheel chair (when my husband, relative or friend is with me) or if I’m alone I have a scooter. I have no balance so falling is always in the back of my mind. When I have my scooter I have a sense of independence, but with the wheelchair not so much. The scooter is a means of getting around. I have never completely accepted what happened to me which doesn’t help, but I have been in a few situations where I’ve needed the assistance of others to get me out of trouble. It’s always when I’m on my scooter and something as simple as my dog’s leash getting tangled in the wheels or for no apparent reason my scooter refuses to budge. In that case, I needed a new scooter, but it was quite the situation when it broke down. If not for the kindness of others I would have been in pieces.
It is hard to strike a happy medium. I am not afraid to ask for help if I need it and I’ve been fortunate in that people have “given me my space” when I’m out on my scooter. I know people mean well and I always thank people if some well meaning soul offers assistance…even if it’s not needed. I’ve never found the middle ground, but I guess the bottom line is we want to be “normal”. That’s not a reality for me unfortunately so I can be at the mercy of well meaning strangers. I no longer drive so that source of independence has also vanished. I must always ask for a ride which limits my socializing. Have you ever noticed how many walking clubs there are when you are looking to meet new people? I’m so glad I stumbled upon your blog…I don’t feel quite so alone and I respect how you live your life.
Well I too don’t mind to get help if I ask for it I been only in my chair for 8 years now and I lift weights to stay in some sort of shape, as to being a ultra athlete for 50 years of my life. I prefer to open my own doors unless with friends that know how to help. What bothers me is. Someone who tries to open a door that I have already started to open, then basically stands in the way. They don’t realize the proper way and that I can’t wheel in because they are in the way, then when say no thanks they get upset and play the martyr in front of their friends and put it on me as ungrateful. There are way to many bleeding hearts and PC people in the USA today, I wish they would just wait till I ask not assuming I need their uninvited help. And fir the people that can’t get what we are saying, just for 1 month live in a wheelchair with no help other than yourself and maybe you will understand. Plus if I let everyone help me all the time I would never be able to control my weight, my life and will become completely useless on society. So please ask first and don’t take it so hard life is a complex situation.
So go with god and keep on climbing