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Amputee Life

Are You Guilty of Poor Disability Etiquette?

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It’s been on my heart a lot to write about disability etiquette or how to treat disabled people.  As a quadruple amputee, I’ve heard and seen some pretty crazy things so I thought it was important to share these thoughts with you.  

What is disability etiquette?  According to the National Disability Navigator, disability etiquette involves treating people with respect. You may not be disabled, but how often are we confronted with someone who is?  What do we say? How do we relate and make them feel comfortable? Have you ever wondered how to treat disabled people? I know that there are rules and guidelines created that personally, I think take things too far.  But if you live your life with a “treat others the way you want to be treated” approach, you’ll do just fine.

Are you guilty of saying something that might have been hurtful?  I know you probably mean well, but it’s important to think about how someone would respond before opening your mouth.  The following are comments that I have gotten. But I also polled my amputee support groups to see what types of reactions they’ve gotten in their lives.

Disability etiquette:   What not to say

“When I’m feeling sorry for myself and think about my own aches and pains, I think about you and then I don’t feel so bad.”  Believe it or not, this is a regular comment that I have gotten since I first received my amputations. This is probably the best example of poor disability etiquette that I’ve experienced. 

I always have a smile on my face, even when times are tough. I think by having a positive outlook, I make having no hands or feet look easy. It’s really not. I just choose not to complain about it.  But a comment like that is very hurtful. They make it seem like I’m so much worse off than they are. Maybe I am, but I don’t look at it that way and I really don’t want to be told that I am.

“Did you lose your limb from diabetes because of your weight?”  If someone is disabled or has an amputation, never assume it’s diabetes, especially if they’re overweight. There are many reasons for disabilities.  I really don’t understand why people go right for the weight card. That’s awfully rude! Yet, it’s more common than you might think.

How to ask someone about their disability

I would prefer that people simply ask me, “what happened? ”  There are many reasons for amputation. Diabetes, military, tragedy and disease, (which is what happened in my situation) are just a few of the reasons.  Rather than assuming, simply ask “what happened” if you really need to know.  Here are some common questions that people ask me about living with amputations.

“I wouldn’t be able to live with it like you do.”  You have no idea of what you’re capable of. But we do what we have to.  For me, without my faith in God, my prayer life and the support of my family I would have struggled a lot more, but I would still have learned how to adapt in my situation.  

“You’re amazing!”  Why? Because I survived?  Because I learned how to live without hands and feet?  Let me tell you, that it’s only by the wonderful grace of God that I am even alive.  He is the amazing One. I simply did the hard work to rebound. But I did it through prayer, hard work and the support of a great family.

mom and son hugging, are you guilty of disability etiquette

There’s so much more to life than the disability

People somehow imply that life is not worth living with a disability.  I know of many people who have picked themselves up, dusted themselves off and went right back to where they left off.  You can choose to be a victim or a survivor. It’s all in your attitude. Personally, I chose to be a survivor. My scars, the ones you can see and the ones you can’t, are battle scars and I’m thankful for them.

Actually, even though I sometimes have my down times and my pity parties, my illness and amputations have been a blessing.  They have enabled me to strengthen my faith in God. I’m stronger, emotionally. My family has grown and we’ve learned to adapt.  We’ve learned that through faith and a little bit of elbow grease, you can get through anything.

Plus, I’ve been given the privilege to tell my story and be a witness for my Lord and Savior through this blog.  As a result I’ve met so many wonderful people and have made some really great lifelong friends.  

How to treat disabled people 

Don’t judge 

People with disabilities are just like you.  They have simply had a circumstance in their life that was most likely out of their control.  They aren’t less than you are. You wouldn’t believe the amount of people, myself included, who said they received snide comments and even more common is that awful stare that says, “you’re not even human.” What on earth is that about?  What gives people that right to imply they are so superior to someone who struggles in their life?  Where do so many learn how to treat disabled people like that?

Think before you speak  

Find something in common instead of looking at your differences.  Like I mentioned earlier, people with disabilities are just like you are.  They set goals, and have hopes and dreams. Plus they want to celebrate life and have a great conversation with you.  But it’s okay to talk about things besides their disability. Compliment their outfit, or their smile. Even talk about the weather.  

We don’t always need to focus on our differences.  Look for things you have in common. It’s not unusual for someone to approach me and tell me about someone else they know who’s an amputee.  Very rarely do people share with me about their friends who have curly hair like I do. It’s always about the obvious physical differences. I don’t know why it has to be that way.  

I’m not saying that’s a bad thing.  It’s probably natural to bring up the fact that your Aunt Sally is an amputee when you’re in the grocery store talking to an amputee.  But remember that there’s so much more to someone than their disability.

Ask if they need assistance before barging in and doing things for them

I was at the grocery store the other day and I was struggling to get something down from the top shelf.  There was a couple of people nearby and even though I would’ve preferred that they hadn’t stared at me while I struggled, I was thankful that they didn’t rush right over and get the product I needed, and do it for me. 

I know that people don’t mind if I ask for help, but I really would rather try first and determine that I need help than have you barge in and take over.  I realize that it can be frustrating to watch me struggle. But independence is important to me. Sometimes I need that struggle in order to figure out how to get the task done.

There are other people who just want to help me every chance they get.   That’s no good either. Don’t underestimate our abilities. Again, if I’m capable, then why wouldn’t I do something myself?  My family is great at making me do my own thing. Sometimes I’ll ask for help, but they’ll remind me I’m quite capable. That can be frustrating, but it’s a good thing.  I don’t need to be babied. And I can do so much more than you expect.  

Treat them how you would want to be treated

Make eye contact but don’t stare.  You would be surprised at how many people stare.  I’m referring to adults. I’ll talk about children in a minute.  But as adults, we should behave with kindness and compassion, never pity.

Seek to understand their situation. You will hopefully never know what it’s like to live under similar circumstances.  But consider what life must be like for someone with a disability. Encourage them, help them when they need help. Be a friend.  Pray for them. I believe that if you put yourself in their shoes, you’ll come from a completely different perspective. That’s a great approach.  After all, proper disability etiquette means you’re a person, they’re a person and we’re all just trying to get along in this crazy world. You can choose to be a victim or a survivor. It’s all in your attitude. Personally, I chose to be a survivor. My scars, the ones you can see and the ones you can’t, are battle scars and I’m thankful for them. Click To Tweet

Coaching your kids on disability etiquette

We already discussed that staring is an inappropriate behavior, because as adults we know staring is wrong.  Children know that too. They just don’t have the same ability to course correct like adults do. I don’t get so offended when children stare because maybe they’ve never seen someone without hands, who walks on strange-looking legs like I do.

Parents, if your children have questions, encourage them to ask.  You may not want to send them over to ask me where my hands went. But if you approached me from the perspective that your child is worried that I’m hurt, which they usually are, I would answer any questions that child had.  Because truly, little kids just don’t know how to treat disabled people.

By pulling your child away and telling them not to look at me, what message does that send?  For starters, it makes me feel like a hideous monster. But it also never addresses the concerns and fears that your child may have.  If kids aren’t exposed to situations like that, then they’ll never know how to react.

What do kids want to know?

I have a friend who owns a local daycare facility.  Last year they were reading a book where one of the characters had a disability and was in a wheelchair.  She asked if I would be willing to come in and talk to her preschoolers. They had dozens of questions so why not go straight to the source? 

So I went in and we had snack together and circle time together and they learned that just because I looked a bit different than they did, that I was just as cool as any other grown up, probably even more so, haha.  They asked me all sorts of questions, they weren’t afraid and I didn’t mind at all. In fact check out all the questions they had. We had a great time!

I think as parents, we want to shield our kids, but we do more damage that way.  There’s nothing to be afraid of. Children are just curious. Encourage that curiosity. 

In the end…

Disability etiquette is really about how to treat disabled people.  I don’t really want to be labeled as disabled or handicapped. I appreciate having special parking spaces and bigger restroom stalls, although I don’t always use them.  And I’m pretty vocal when I see young people taking advantage of someone else’s placard just to park closer to the store. But we shouldn’t be judge and jury over those placards.  I’ll be honest. I’m a bit guilty of that. However, some disabilities just are not as obvious. That doesn’t mean they don’t exist.  

Basically, I want to be just as able as you are, but unfortunately I have a few limitations.  I guess my best tip for when you’re wondering how to treat a disabled person is, treat them the way that you want to be treated.  Don’t let their disability be the focus of your conversation. Unless they ask for help, don’t offer. Assume that they can do anything they need to do.  

Above all, let’s not label them.  I’m just me! I’m strong, I’m able and I’m a child of the King.  Someday I’ll get my glorified body. But for now, I’ll adapt. I’ll overcome, and I’ll do my very best. Just like you will.

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34 Comments

  1. I think people could have more disability etiquette but it’s hard because many aren’t taught this. But just compassion should be poured not ignorance.

    1. I agree, Kiwi. I don’t think you need a guideline on disability etiquette if you simply have love in your heart and approach folks with a treat others the way you would like to be treated mindset.

  2. We teach our kids to be respectful of others and their differences. We’ve been known to tell them to ask questions instead of just staring. Often people tell others to not look, and do their best not to make eye contact. No one likes to feel ignored.

    1. That’s true, Fatima. Nobody likes to be ignored. But kindness goes a long way. It’s sad because we don’t ask for our disabilities and to feel inferior because of them is difficult.

  3. I love this post so much! Definitely worth sharing. People can be insensitive at times, but I learned that sometimes it’s only because they don’t understand what others are going through. Hopefully through this article, people will know how to communicate with proper etiquette.

    1. That’s true, Urika. People get intimidated when they’re not sure how to approach people. They just need a little help sometimes. Hopefully, I can help.

  4. This is a great article and I’m sure it will help so many people! I don’t think I’m guilty of any of these but very good things to remember.

    1. Thank you, Brianna. My goal is to get the word out so that more people can be more alerted to the possibilities and practice kindness more often.

  5. My daughter has Down Syndrome. I worry about this topic as she gets older. However, I have been pleasantly surprised with the children in her school as they have generally been amazingly polite and kind. They want to hang out and chat. It is totally different than when I was a kid. I recognize this is not how it is everywhere but it has been nice so far.

    1. Kids today seem to be more sympathetic, which is a good thing. But it’s interesting because adults, who are setting the examples, are not always leading by example. May your daughter continue to be blessed with the kindness she has experienced so far.

    1. No, I haven’t seen it, but it could possibly be related to my topic? I might have to check it out, although not if it is upsetting.

    1. Yes they do, Stacie. I know that if they realized how rude they were acting they would make a change. Maybe they just don’t know.

  6. Empathy and respect are very important on this issue. I think we should always observe Disability Etiquette and should also give awareness to people who don’t know it.

  7. Great article, Wendy. I’m glad you don’t let how others treat you hold you back. It’s good to educate. I find myself having to do the same with blindness. Misperceptions exist everywhere and so do kind hearts who appreciate tips like these to prevent embarrassment. I agree the best advice is to treat others the way they want to be treated. However, instead of being a victim or a survivor, I like to call it being a victim or a victor. You, Wendy, are a victor!

  8. This is an excellent article! It addresses so many needed topics. I tend to be the parent that hushes their child when they are staring and asking questions. It never occurred to me that it makes others feel bad. Thank you for this!

    1. I’m guilty too of hushing my kids. But it can oftentimes be so much better to use it as a teaching moment. As adults we understand that kids have questions. For me, it’s okay if they want to ask.

  9. Wow what an eye opening post about Disability Etiquete. I am guilty of not knowing what to say when someone is hurting. I don’t believe people truly mean harm BUT what they say or don’t say does have a major impact on any hurting person. Thank you for this wonderful insight, Wendy. You are such an amazing inspiration to me! ❤

    1. Thanks so much, Donna. I agree that most people don’t mean harm. But it’s simply taking that extra thought about what they’re saying and the impact it could have.

  10. I love this! My boys have special needs and I agree with so much you said!

    I agree, the comments that people blurt out are often hurtful, and the comments that people think are helpful, really aren’t. I often hear “God gives special children to special people” and “I don’t know how you do it,” or “I could never do it.” My usual thought/response is “I’m just taking care of the children God gave me, and I would hope if your children had special needs, you’d do the same thing.”

    All that to say, I completely agree with everything you’ve said! We just want to be treated like normal people, not superheroes, or as less than others and to be avoided.

    Oh, and side note, when my little sister was 16 she had to have a major back surgery, and though she doesn’t use a wheelchair or a cane, she’s always in significant back pain. She gets comments all the time about being young and not being disabled and she shouldn’t be stealing/using handicapped spots though she has her own placard. She gets angry and hurt when accused of those things, but when a person just asks to try to understand her, rather than accuse her, she’s happy to explain. You don’t know another person’s story until you ask, and not all disabilities are visible.

    Thanks again for this post!! 🙂

    1. I appreciate that you understand, Jenn. It’s a shame that your sister gets so much flack. We should never judge until we’ve walked miles in someone else’s shoes, and even then it’s wrong. Thanks for your comment.

  11. WOW, Wendy! This sums up your post in a nutshell…Disability etiquette is really about how to treat disabled people. When I “look” at you I see genuine beauty and kindness, someone who loves the Lord with all their heart, soul, mind, and strength, I see someone who doesn’t let ANY obstacle stand in her way of reaching her dreams! My Mama has throat cancer and has to talk with one of those sticks. At times I’m sure I make her feel bad and I by no means don’t purposely do that. As you know I have severe hearing loss and at times it’s really hard for me to understand her. Even more so when her batteries are low. She’s told me numerous times she doesn’t mind the stares and questions from kids, it’s the stares and rude remarks she receives from the adults that are so bothersome. She rarely goes out of the house because of this. She could really use your positive outlook on life. As always, thanks for being YOU and another amazing job on your post!

    1. Thanks so much, Angie. I’m sorry that your mom let’s the unfortunate stares and remarks keep her home. I think that people don’t realize they’re rude or maybe they do. I don’t know. In any case, I hope that these folks will get some disability etiquette and realize that we aren’t 2nd class citizens because of our circumstances. They just need a bit of education.

  12. This is wonderful. I have been on the giving and receiving end of poor etiquette. I have said dumb things and, when I had cancer, had some pretty dumb things said to me. Like you, I had determined that I would be positive and not let it get me down. While mine was not a disability you could see, I still have many lingering after-effects which change my lifestyle but I always remind myself – I am Alive and God loves me! That’s all I need. Thank you for the reminders.

  13. I’ve been waiting for this post Wendy! When I met a quad amputee while out for a walk, I gave her a big smile and commented on the windy weather. It feels like I should have said more, but now I know that If she hadn’t been a quad amputee, I probably would have done and said the exact same thing. So I loved your comment to just find things in common as topics to speak about. Loved the story about your visit to the preschool as well 🙂

    1. Thanks so much AnnMarie. I don’t think we need to point out their problems or insecurities. They know what they are. I’m glad you had a normal conversation and I’m sure that she appreciated it too.

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