Sheri asked a great question over on the Facebook page yesterday. She explained how her family, including her limb-different son, went to visit relatives over the holidays and that she “started to feel like those we were visiting were more interested in showing off his arm than they were in spending time with him. One relative wanted him to bring his arm so she could ‘show her friends how he’s the same as others.'” Sheri asked, “Do you (amputee or parent of one) feel like people can’t get past a missing limb? That the person and/or prosthesis becomes a ‘side-show’ or a spectacle?”
My answer? Yes and no.
For the most part, I believe people are trying to do the right thing, they just don’t know how to do it well. They want to show that they are ok with the difference, but then they go overboard. And this issue of “normalcy” makes things even more difficult. It’s this strange balance of acknowledging that a person with a limb-difference is perfectly fine the way they are, but also realizing they are different; not “normal.” You may remember the video I posted of when I was on the news eons ago. My mother talked about how great it was to see me doing things “two-handed, normally two-handed.” Was she disappointed that I performed tasks differently than people with two hands? Of course not. She struggled just as much as anybody with trying to express her joy in seeing me do something “the normal way,” while appreciating that I did things different and I was fine either way.
Aimee Mullins does a fantastic job in her powerful TED Talk of explaining the fallacy of normal. There is no normal. There’s common and typical, but no normal. Everybody wants to feel normal, but normal is overrated. However you do things is your normal. Who cares how other people do it?
As far as Sheri’s questions go, I think people can get past the missing limb. I actually know they can. My sister used to tell me to “use your other hand” all the time. I’d have to remind her, uh, I didn’t have one. I’ve had many people tell me they forget I only have one hand. I don’t understand how that’s even possible, but I have to believe them!
That said, when people encounter a difference like ours for the first time, it’s expected that they will not know how to react. They know they should ignore it, but c’mon, he’s got one arm! So, then they feel bad asking about it, but they really want to know. I don’t envy their position.
That’s what this whole LivingOneHanded thing is for, by the way. I’m putting myself out there as that “side-show” because I realize people want to know how I do things, but don’t want to be rude. They want to see what’s “normal” for me. And I’m happy to oblige.
Ultimately, people who are different in any way will have to deal with the fact that people won’t know how to react to them. People will be nice, they’ll be rude, they’ll be inquisitive, they’ll insult, they’ll encourage…if you are different, you will experience the entire spectrum of reactions. My opinion is, it will make life easier if you expect that.
This morning, for instance, I stopped at the grocery store to get breakfast. I gave the older lady at the register my card and then she blurted out, “What happened to YOU?” “Excuse me?” I asked. It was so quick I didn’t understand her. “What happened to you?” she repeated and nodded at my left arm. “Oh, I was actually just born that way,” I replied. “Hm,” she grunted and furrowed her brow. I wished her a good day and went on my way. It surprised me a little, but honestly, it didn’t bother me at all. I expect the unexpected when it comes to my difference and I’m totally ok with that.
Is it frustrating to be to be a spectacle? Sometimes. Does it get old to be the subject of everyone’s curiosity? Occasionally. Do your friends and family get past it? Absolutely. And would I change any of it?
Absolutely not.
Usually it irritates me and my son but sometimes I’m OK with all the questions. Disappointing at times to see all those people pointing in background of Disney pics. Um…these are our keepsakes of his first visit!
Once when we were shopping I got wrapped up in analyzing a toy and a lady came up and said ‘oh, what happened to him’ and I had a moment of panick thinking in my neglect of studying the package he had fallen out of the cart or something. Took me a minute to get she meant his missing limbs.
Isn’t it funny how we’re caught off guard by that question?! And I’m sorry about your Disney experience; that’s hard. Hang in there!
“There’s common and typical, but no normal. Everybody wants to feel normal, but normal is overrated. However you do things is your normal. Who cares how other people do it?”
OMGosh I love that Ryan! I have a hidden handicap, Multiple Chemical Sensitivity (MCS), which has been called the disease with an invisible wheelchair. I can’t be around thousands of chemicals our world is inundated with, in homes, churches, stores, etc. or I become ill, even to the point of being bedridden. It’s funny after all these years (thirty) I still keep apologizing to those who are offended when I can’t visit in their Fabreeze filled homes, or sit next to them due to their cologne or clothes washed in scented detergent. I just realized (light bulb moment) reading your article, that I’m still trying to get to “normal” so I don’t offend others, and so I can live a “normal” life. Hello! The way I, and thousands of people like me, have to live “is” our normal, and it’s OK!
I’m so glad this resonated with you, Betty Jo! 🙂
I also love your view of this subject, much like my own. I do think, however, that language in this area has simply ‘changed’ over the years. ‘Normal’ is no longer viewed as a good way to express things that are common or typical, but years ago, it was a totally viable word to use. 25 Years ago, words such as ‘handicap’ and ‘disabled’ were still used quite a bit, but we’ve moved past those words, and now prefer ‘different.’ Maybe it’s an ever-evolving circumstance….? Thanks for sharing. Katie M
You’re right, Katie. I think language is always evolving and, for the most part, believe that to be a good thing. Words carry so much weight and can define us in ways we wish not to be defined. They can also give us power and courage and strength when used well. As long as we’re thinking about our choices of words, I think we’ll be alright. Thanks for sharing your perspective! 🙂
I was born with a left radial club hand, so my arm is shorter, curved, I am missing my radius, I have limited range of my elbow and wrist, and I don’t have a thumb.
I was working a cash register and a guy came up to me, whom I did not know, and started listing syndromes asking me if I had any of the ones he listed. At first I was shocked that someone was so direct about it so I told him that it was none of his business. He continued pestering me about it and how he felt sorry for me (that’s my biggest pet peeve). I finally told him that they don’t have a syndrome for me and that I pity him because he was not born with the opportunity to be forced to think outside of the box when faced with new situations and have a unique perspective on the world.
That is probably the worst experience I had simply because he would not let the subject drop, and had pity for me. There will always be ignorant people in the world though, they just provide me with entertaining stories to tell later.
My friends have told me the same thing that they forget my arm is different. When I ask why they say it’s because I don’t make a big deal out of it and it’s just part of me. They love me and my little arm/fin. Plus who else could they call when the cap falls in the detergent bottle and only my fin can fit inside to fish it out =)
Thank you SO much for sharing your experience! It can definitely be difficult.
We meet at a senior center for church and one day this lady came in randomly, saw me, and said, “Your mom must have done a lot of drugs.” It was amazing. I explained that I was sure that wasn’t the case, but she was insistent. Oh, well.
And my friends have said similar things as yours. It’s just a part of who we are. 🙂
Keep in touch!
My 1 year old’s arm looks just like yours. OK, his has less arm fuzz. I thought I wouldn’t be able to get past it, but now I do forget and I don’t really notice it.
BUT on the flipside, when i meet other people with limb differences, they remind me of HIM, and I get all wistful and mom-mushy and probably make goo-goo eyes at them. And then I’m sure they think I’m a weirdo staring at their arm. Not because it’s different, but because it’s something I associate with someone I love :).
You win the Cutest Comment of the Day award. Congrats! 🙂
Love this post!!
Thanks, Megan!
Thanks, everyone, for your responses. I was just floored that a grandma would call specifically to ask us to bring Micah’s arm…& then, tell us it was because she wanted to show her friends that he could do things with 2 hands.
It’s so much easier (for me) to get those kinds of comments from strangers, not family members.
Totally. We can be patient and somewhat dismiss those comments and requests from people we don’t know; it’s harder with family. Thanks for bringing this up, Sheri!
Thanks for your honesty Ryan. My daughter was born lae. I sometimes forget that she has one hand!
Thanks for sharing, Tara! I’m glad you forget. 🙂
Thank you for writing about this subject. I have an arm difference. From the moment I realised part of my life was different from others everything became much easier. You say: I expect the unexpected when it comes to my difference and I’m totally ok with that. Super.
Hi Ryan, I recently discovered your blog and so glad I did. My son was born 5 months ago with both arms, but no left hand. I was devastated because I had never known or seen anyone born with such a condition. Over the last few months, I’ve learnt to accept his left arm as ‘normal’. However, there are still times I worry about how his life will pan out because of his limb difference. Reading you gives me immense hope. I wish my son grows up with a great sense of humor, like yours, to help him cope with all sorts of reactions.
Love this space!
I’m so glad you found us, D, and that you’re enjoying the blog! You have a big job ahead of you, but it sounds like you’re already doing a great job raising your son. He’s wonderful, I’m sure, and his future is bright! 🙂
My son was born the same exact way both arms, but no left hand and he’s being denied disability and we are looking for more information so he will get approved so he can get some assistance in life. Can someone please contact me and help me out.
Ryan,
I’m so glad I found your blog. I’m 52 with an arm difference. Ithink the hardest thing I have to encounter are children. They ask what happened with a look of concern.I usually just tell them I was born this way, but that isn’t good enough most the time. Was curious what you say in this situation.
Thanks for asking, Patti. I agree, kids can be the most difficult sometimes because they really can’t comprehend the facts of the situation (sometimes). They think you’re hiding it or you left it somewhere. They really don’t understand the concept of being born that way. Sometimes I’ll just keep trying to explain it in different ways, like, “You know how you were born with two hands?” (then I make them show me their hands) “Well, when I was born, my hands were like this. They’re different, but I can still do all the things you can do!”
Or I do this: http://www.livingonehanded.com/its-okay-to-have-fun-with-it-sometimes/
lol
Great to meet you, Patti!