This blog is going to be a bit different from my normal entries. I not only want to help people in my personal life and community, but I also want to help others understand more about the disabled community in general, because I feel like the more understanding we can have, the more compassion we can have for one another.
In my 31 years on this earth as a disabled person, I have encountered people from all walks of life. Some people are comfortable with the chair after getting to know me, some don’t see me as “the girl in the wheelchair”, and some people are OBSESSED with the fact that I am in a wheelchair. I have heard lots of stories and so many comments over the years. I tend to take a lot of the less than tasteful comments in stride, because I understand that people generally feel the need to make comments for a few reasons. I have realized over time that people make comments for various reasons, but the top two, (I believe) are these:
(A) They are uncomfortable with the situation because they’re afraid of saying the wrong thing, so they feel the need to lighten the mood (or make themselves feel more comfortable with the situation) by making a funny joke.
(B) They are trying to connect with me on some level or they’re curious about my situation, but they just aren’t sure how to approach it, so they just say the first thing or ask the question that is burning in their mind. This includes parents of children in the disabled community.
I decided that I wanted to share some of the experiences I have had when dealing with people and the discomfort or lack of exposure of being around a disabled person. Let me add… not everyone in the disabled community will agree with some of the things I have to say about certain things, because we aren’t all exactly the same. These are just some of the things that people have said to me and some of the things that have happened in my own life.
“What’s wrong with you?”
I think you meant to say “I’m just curious, but why are you in a wheelchair?” Keep in mind, every time I’ve been asked this question in this way, I have to bite my tongue and not respond by saying “What’s wrong with YOU?” Instead, I will probably respond with something along the lines of “I am in a wheelchair because I was born with a birth defect called Spina Bifida and it affects my mobility.”
“Can you have sex?”
Of course I can! My parts aren’t stitched up. Also, if I just met you, this is not an appropriate question to ask in the first 5 minutes of meeting with me, especially if you were trying to date me. I’m a very open person, and I don’t mind answering specific questions on this topic, but please don’t dehumanize me by asking such an ignorant question. There is a time and place for these types of conversations, but please think about whether you’d ask a “normal” total stranger this question so quickly. If not, then maybe you shouldn’t do that with me either.
“Slow Down! You’re breaking the speed limit!” “Who’s going to win the race?” ***sound effects*** (while my husband and I are minding our own business just trying to get through the mall).
I have had sooooo many variations of these “clever” comments. Please forgive me for rolling my eyes or ignoring that remark all together, but you are definitely not the first person to be this “clever”, and you won’t be the last (probably not even the last to say it before the day is over). This happens ALL THE TIME.
***PSA: NEVER, EVER, EVER say these things to me if you’re working in retail or customer service. I will be addressing it with your supervisor.***
Other things I have heard:
“Go ahead… It’s not like it matters anyway.”
This might have been the most shocking thing I’ve heard. I was sitting at a crosswalk, waiting for it to change. My husband had already crossed and was waiting for me on the other side, when this guy looks over at Wes, then looks at me and then looks at my chair and then says “Go ahead… it’s not like it matters anyway.” which says to me “You’re already in a wheelchair. Who cares if you get hit by a car while breaking the law.”
“You’re pretty (for a girl in a wheelchair).”/”You’re SO pretty.”
As if in shock that a person in a wheelchair could possibly be attractive… or because I’m in a wheelchair that I have my own unique division of attractiveness that is not on the same level as “normal” females, because, you know… wheelchair. This is such a back-handed compliment that it never even sounds like a compliment to me now.
“I have a cousin who died of Scurvy, so I can totally relate.”
Gee thanks, random stranger… I feel so much better now.
P.S. I’ve never met someone that knew someone that died of Scurvy, but I have met people that had to use a wheelchair for a month when they broke their leg… or they had a great-grandfather they never met that died of Polio, so they could definitely understand EXACTLY what I’m going through.
P.P.S. I’m a very active person with a disability. You actually have no idea what my life is like or if I’m miserable or not. You just met me while shopping or watching a band play, so clearly I’m not doing so bad though.
“What kind of van do you drive?” (or other sweeping generalizations and other assumptions that imply that every person with a disability is exactly the same), or assuming someone other than myself takes care of me is insulting.
I have been taking care of myself for a long time. I’ve been driving since I was 15. I’ve had jobs or been in school a pretty big portion of my life. I can take care of myself. Also, I don’t have to have a van just because I am in a wheelchair either. Also, I drive a cute little sports car called a Mazda RX-8 (with hand controls, but anyone else can still drive it normally too), if you must know. This isn’t the case for everyone with disabilities, but this is the case for me. I’ll even show you how it works, if you want. Also, assuming my lazy dogs are service dogs: While this might seem plausible, why does my average, lazy dog have to be a service dog? I don’t get it.
“You’re such an inspiration!”
You mean for doing exactly the same thing that you’re doing right now? Thanks… I guess?
This term is overused. While meant to be a compliment, I am not here to be your personal nugget of inspiration. I am here because I’m hungry and needed food. I’m in the gym because I want to lose weight or improve my life on some level, JUST LIKE YOU. If I genuinely inspired you to get out and do something meaningful in your life, then great! I’m happy I inspired you to do something positive… but if me being out at the grocery store inspires you, I think you need to re-evaluate your life and improve some things.
Insisting on doing something for someone with a disability after they’ve declined the help.
If I need help, I’ll ask.
The first time is considerate and I appreciate the offer. The second and third time you ask, it’s insulting and annoying. Again, I’m not here as your charity case, and if you do things after I’ve requested that you not do them, you have crossed over into being disrespectful. I’m not saying don’t ever help someone with a disability in any way, but if they decline the help, leave them alone… By doing something for them (after they have politely declined), you could be taking away their opportunity to do things for themselves so they can be more independent. There is a difference between trying to help someone and hindering them. The same goes for insisting on trying to put my chair into my car that I just drove by myself to the store. I have literally given someone a wheel to just stand there and hold and look silly while I do the rest, so they don’t slow me down. I have a system. I’m good. Thanks though!
Grabbing my chair/Pushing without asking
There is a reason I don’t have push handles on my chair. I personally don’t NEED someone to push me. Some people do. Some don’t. If you grab me or my chair or try to move me from where I am without my permission, you will get a dirty look or an ear full. I consider my chair an extension of my body. If you wouldn’t grab another female by the arm or pick her up to move her from one location to another, you probably shouldn’t do it with me, and at a MINIMUM, you shouldn’t do it to me without warning, especially if we are at a crowded bar. I am “on guard” all of the time, watching for drunk people who might be about to fall on me.
Pulling your kids away when they’re curious
If you learn/read nothing else in this entire blog, READ THIS. Don’t do this! Don’t tell your kid to not ask questions at all. I mentioned earlier the right or wrong way to ask questions. Questions and curiosity are totally fine. Let your child ask their question. That is called a “teachable moment”. Give them an opportunity to learn about something new. Kids are innocent. Your job is to teach them how to ask those questions in an appropriate way and to encourage them to show compassion and kindness to others. Pulling them “out of the way” send messages: One to me, which is that you think I am going to run over your child. I promise I won’t, if they’re just walking in front of me in an appropriate, well-behaved way. The other messages that are sent to your child when you do this says “Don’t ask questions.” and “Be afraid of the unknown.” Neither of which (I imagine) was your intention.
“You and your husband give me hope for my daughter.”
Parents of children with disabilities: I am SO happy that you acknowledge that what my husband and I share is something truly special. I believe it is too. I am also thrilled when I see parents that have decided to let their child get out and experience life. I wish more people would allow their own children to do the same. Please, under no circumstance though, try to define or limit your child to ONLY exactly what YOU think your child should strive for (or even settle for). Just because I happened to fall in love with and marry an amazing man in a wheelchair does NOT mean that I only married him because he is in a chair. I married him because he’s AMAZING in a billion different ways. Please don’t let your child with a disability feel like they HAVE to do the same, or that they HAVE to marry someone that has to take care of them. Instead, encourage them to learn how to take care of themselves to the best of their ability, let them make mistakes or learn things the hard way… but most importantly, let them figure out what THEY want or need for their life. If you constantly hover, you could be holding your child back from reaching their full potential and happiness.
Other things NOT to say to a wheelchair user:
“Aww!” (if my husband and I are just passing by you at the store or the bar or whatever). I wish people realized how condescending this comes across.
“I feel so sorry for them people” Yes, people… I had a random, drunk cowboy at a bar say this to a friend of mine that was standing right next to me. Let’s just say that this didn’t go over very well, especially after he decides to later talk to me and complain about how he has broken ribs from being a bull rider… And he feels sorry for me and “my people”???
“I’d kill myself if I was in a wheelchair.” I have no words for this one, but yes, it has been said.
“Can I have a ride?”/”Want a lap dance?” I actually don’t mind these, but just know that I’ll probably let you, but will also let you know that you aren’t the first and won’t be the last. 🙂
“You need spinners/horn/engine/system, etc.”
While this sounds cool, it’s not really logical, considering I have to take my chair apart and lift it myself to put it into my car and it would be REALLY heavy and/or annoying to others. I’ll settle for my bright pink wheels instead. 🙂
STOP STANDING INSIDE THE DOORWAY IF YOU’RE HOLDING THE DOOR FOR ME.
I really appreciate when people hold the door for me. I do the same for others coming behind me. It’s common courtesy, but just a PSA for those of you who are afraid I’m going to run your toes over: Get on the other side of the door when you hold it open, so I have enough space to get through. Just a friendly tidbit. Also, I won’t run over your toes, if you’re paying attention to what you’re doing.
Stop high-fiving me if you don’t know me.
I need my hands for pushing. Also, I don’t know where that hand has been. Sorry, dude! Guys and gals, also, please don’t pat my head. I am not a dog or a child.
You know what… As a general rule, don’t touch me if you don’t know me…
unless you’re trying to get by me. I’m not a charity case. I don’t need you to touch me to acknowledge my presence. I don’t need your sympathy… I need your compassion.
Forcing me to feel obligated to let you pray over me in VERY public places.
I am a Christian, but you may or may not know that, if you just passed me in a store. I truly have no problem with someone praying for me. I appreciate and encourage people to pray for others, but I have been prayed over in some very weird places, all while I was minding my own business prior to the encounter. I have been prayed over at a McDonalds bathroom (my mom can vouch that the woman actually was on her knees touching my knees and started speaking in tongues… I was very young and VERY freaked out). I have also been prayed over at a bar, a mall, a Halloween store and a Wal-mart (by 3 strange men in the case of Wal-mart-I kept my eyes slightly open because it was odd for 3 men to approach me at midnight at a Wal-mart to pray over me). Also, if I let you pray over me (and I usually do), please don’t be surprised that one of my prayer requests isn’t for a miracle cure for me to walk again. I truly believe that God made me this way and that my life was MEANT TO BE lived the way that I am living it. I am happy and wouldn’t change it for anything.
I realize that this blog may come across as negative. It’s meant to be a nice, realistic, and humorous way of saying don’t be a jerk, don’t assume, and please don’t put me in uncomfortable situations, especially if it isn’t something you’d do with everyone else you encounter. Ask questions, but don’t pry. We all need to help each other out and teach each other and show kindness, but we also need to respect one another and learn appropriate social boundaries and apply them as well.