Pity and friendship are two passions incompatible with each other.
–Oliver Goldsmith
Last week a beautiful Halloween picture of Lamp dressed up as Ariel was regrammed on an instagram account that showcases people with disabilities who use adaptive equipment doing all sorts of awesome stuff. Most of the comments were sweet, supportive and wonderful. But there was one that rubbed me the wrong way and I couldn’t not get it out of my head. It said: “That’s not fair! I hate that kids have to suffer like that!”
There she was, my beautiful, smiling little mermaid and somehow all this person saw was suffering. I’m pretty sure this person was not intentionally being rude. Maybe they even thought this was showing kindness and support? Nevertheless it was offensive. I wasn’t planning to respond but after a couple of days I felt strongly, once again, to take the opportunity to educate. Here’s what I wrote in response:
Suffering? This girl is THRIVING. You’ll never meet a happier, [more] positive little ray of sunshine. The only time she ever “suffers” is when she has to deal with people who think that she has a sad, little life or who think of her as a ‘poor thing.’ She is not held back by her disabilities nearly as much as she is held back by people who have preconceived notions about her disabilities. Sure there are things she can’t do, just like there are things all of us can’t do, but she is much more able than she is disabled. I hope you know that I’m not saying this out of anger but from a standpoint of education. Please don’t ever pity a person with disabilities. It may seem like the kind thing to do, but pity [is] judgement. And judgement is the most damning and difficult obstacle any of us have to face. God bless.
I thought this would be a good time to revisit this post I wrote about pity a while back and why it’s such a problem for people with disabilities. This is just my take, not as a disabled person, but as a disability advocate + mama of a disabled person. I made a few edits to the original post as it always felt a little unfinished to me, but the overall sentiment is the same. You can read the original post here published in July of 2014.
A scene from the library last week: A little girl spends a few minutes assessing Lamp then walks up to PSP and says, “I feel so sorry for your sister for missing an arm.” I’m not sure PSP knew what to say, but I think she just smiled and shrugged her shoulders like OK… if you want to.
Later that evening Lamp said, “Hey mom! I’ve got a good idea for what to say when people say they feel bad for me!”
“OK, what’s your idea?” A little surprised because I didn’t think she heard this exchange at the library.
“I can just say, ‘It’s OK! You don’t have to feel bad for me.'”
“That’s a great thing to say.”
“Yeah I can just show them my arms and be like ‘it’s OK, my arms are just different. I’m not sad.'”
“That’s right. You don’t want people to feel sorry for you.”
“Nope!”
Besides the fact that my 4 year old is often surprising me with just how much her young mind absorbs, I was struck with the fact that 1) she recognizes what pity is and 2) she does not want that crap. She might not be able to define it, I’m sure she doesn’t even know the word, but girlfriend does not want people feeling sorry for her.
I know in this example these words were coming from a little girl who doesn’t know any better, but I hope you understand that it’s not about the girl. It’s about my daughter, a girl born with disabilities, who doesn’t want people to pity her. And we have definitely had adults share similar sentiments as well, actually using the term “poor thing” in reference to Lamp. For the love, please do not ever refer to someone with disabilities as a “poor thing.” Yes Lamp still laments that she can’t do certain things, and yes she even asks why she was born this way. Those are legitimate questions and feelings that she feels. But she does not want anyone else feeling sad or bad for her.
I’m not sure I ever really understood pity before having Lamp. Truthfully I still have a hard time defining the difference between pity, empathy, sympathy and compassion–it can be confusing. As this post states, “these things can interconnect, and even at times, seem interchangeable. They all have to do with emotions that are born out of other people’s suffering, sorrows and tragedies.”
But here’s what I now understand about pity now and why it’s so damaging as it pertains to someone like Lamp. Pity stems from judgement. Pity looks down on you and judges your life and your circumstances to be so far gone that it must be completely incompatible with happiness. Pity assumes the worst. It seems to me that empathy and perhaps sympathy tend to happen as we listen to others, as we hear where they are coming from and respond accordingly, i.e. mourning with those who mourn. But pity it isn’t listening, it isn’t responding or interacting, pity only judges. And that judgement is usually damning. Of course pity tells you more about the person giving it than the person receiving it because when you ‘feel sorry’ for someone that revels your fears, your prejudices and your misconceptions. Unfortunately pity can still hurt the person on the receiving end. To tell Lamp you feel sorry for her, is to tell her she’s not enough, that there is something intrinsically wrong with her, that she is not capable, that being herself is a negative thing and on and on and on. It’s not hard to imagine how damaging that message could be if internalized just once, let alone over the course of a lifetime.
I posted a Ted Talk a few weeks ago by a woman named Stella Young. She spoke about the objectification of disabled people and many readers had mixed reactions to her talk. Some of you thought she was looking to take offense at people who simply meant well, while others of you (a few that are actually disabled) agreed with her perspective. Part of her message was that when we expect too little of people with disabilities, we hold them back as a society, and that the biggest obstacles disabled people have aren’t the limitations their bodies place on them, its the limitations society places on them. Pity plays a huge role in that. Pity isn’t looking to elevate, pity holds back.
The assumption that a disabled person leads a life of sadness or overall just “less than” an able bodied person is a common one. And even though few adults would ever say that they feel bad for Lamp, many, many people have expressed a sort of equal but opposite point of view, “Oh wow! She’s really happy isn’t she?” or “Look how happy she is!” Again, I know people mean well but I’ve heard this enough to know that some people are genuinely surprised that a girl like Lamp should be so happy.
In short, pity sucks. Literally. It sucks away potential, self esteem, encouragement, and enthusiasm.
My daughter was born with limb differences, but she was also born with a light in her eyes. A light that I hope and pray everyday never gets snuffed out by the weight of pity.
I’d love to hear your thoughts… Do you feel like you truly understand what pity is and would you care to broaden my definition? Anyone ever been on the receiving end of that kind of pity? Is there a difference between feeling sorry for yourself and others feeling sorry for you? Any other thoughts?
The term disability is defined as 'limiting'. You are years into learning and experiencing this disability. Think of how you felt when you first found out; your fears, your concerns, etc. To others, this may be their first experience or knowledge of this specific disability. They might be right where you were when you first learned. I don't think pity is offensive or wrong; it shows a caring heart for others. A child would think not having something they have would be sad. I'm sure most people wouldn't wish for a disability. Isn't that human nature?
Hi Anon–
I have no problem with the word disability–sometimes it sucks as a label, but it's true. Lamp is disabled. Also, sometimes it's great as a label because this is how we get services, adaption equipment we need, etc. And while most people wouldn't wish for a disability, there are a lot of things most people wouldn't wish for–divorce, sickness, disease, financial ruin, abuse, etc…and if we were to take that ONE part of a person's life and make it the whole of who they were and say we felt sorry for them and how awful…well most people wouldn't like that. I'm not so naive to think that there aren't any disabled children who suffer–some do. Horribly. Some kids experience a large amount of pain and trauma on a daily basis. But that does not typify the disabled experience.
I was starting a longer response, but I found that I was just repeating what I was saying above… I wasn't angry at that woman for her comment, I was trying to educate her. She didn't know better, so I told her. I don't think that's wrong. As I said I don't think she meant to be mean….but Lamp has been on the receiving end of those comments and they are hurtful. In real life. Also, I just don't think compassion and pity are the same thing…especially not as I described above. In fact when I was still pregnant with Lamp and we didn't know how everything would shake it is when I remember someone saying "poor thing" in reference to her…even then it rubbed me the wrong way and I did not appreciate someone already dismissing my unborn child as a 'poor thing.'
And yes we were devastated when we first found out (in large part because we didn't know what was wrong and we didn't know even if she would live) and I'm well aware that many people this is their first experience with disability which is exactly why I do what I do. I want to spread awareness and educate. Which is also why I do the special needs spotlight–I realize MY experience can't speak for every special needs family…but I have learned enough to know there are certain things–like, pity–that are widely not wanted by the special needs world.
Oh boy, this keeps getting longer and longer…I think I've said enough. 🙂 Thanks for your comment.
Thank you for sharing this. I can now see how I'm accidentally teaching this pity to my kids. We emphasize how thankful we are for healthy bodies and our strong legs and arms, etc… While I think it's okay to do this, it's also important to acknowledge that all people are different and that's okay, no person is better than another.
Sarah–Totally agree! It IS OK to be grateful for health bodies, strong legs and arms…I sure am. We can't teach about every possible scenario other people might face in life, but when they come up naturally I try to discuss them with my kids. And emphasizing that in general being different is OK is a great way to start.
Thanks to you Miggy I was able to guide my child through a very special, special needs encounter. A girl I grew up with was visiting with her parents. She has Down syndrome, pretty severe, and something else that growing up would make her unpredictable–like either give you a hug or a punch in the stomach. My boys, 6 years and younger, wanted to know why she talked and walked differently. I was so relieved that I had been reading your blog! We had a brief "that is the way she was born" talk and then looked for similarities–exploring the house, movies ect…They liked going through our DVDs with her and sharing favorites, they opened up and their shyness melted. AND spending that concentrated time with her, well she started pointing out words and reading them to me! Her sister didn't even know that she knew how to. I was always a little shy around her when I was younger (like I said, never knew if a hug or punch was coming) and so I am so grateful that I had this incredible experience with her now. Thank you for all the awareness you spread.
And as far as pity….I teach 4-7 year olds in church and noticed that the coloring pages for supplementing lessons usually have the child in a wheel chair as the recipient of service. I don't think I would have thought twice about it, but a little girl in my class is in a wheel chair. She doesn't need pity. Not that service is pity, but I just want more showing children in wheel chairs giving service and not just getting it.
abichristi–
Thank you so much. This comment made my night. I'm so glad you were able to navigate that well–sometimes I still have a hard time doing this…it's not an exact science–but wow…that's so great you had that experience. Thanks for sharing it with me.
Yes, excessive pity is harmful. But feeling/saying sorry that you have to deal with (Insert disability) is saying just that. I do not want this to sound wrong. But somebody saying "i am sorry" doesn't always have to mean pity. Would you choose disability for your child, this or any other? I would not. We deal the best with what we are given. Not dwelling upon it is a choice, good choice. But I think we all can agree that disabilities make life harder. Doesn't mean less valuable or less beautiful, just harder. And having one, of any nature, limits as in some way, like it or not. It can open new opportunities also. Somebody saying "I am sorry you have this" means just that.
I do not know how to put it in words. Maybe when I sleep on it, I will be able add something more reasonable 🙂
Alexandra
Here's the thing Alexandra… as much as no one, myself included, wouldn't initially choose this for your kid, I also would never choose a disability-free world. And this is where I go back to the fact that EVERYONE has a disability and life is hard for all of us in some or many capacities. I've seen many an able-bodied person I would consider to be much more 'handicapped' than Lamp. We all know people like that.
As far as actually saying you feel bad for someone, I would say timeliness makes a difference…when I was pregnant with Lamp and we were coming to terms with life changing news, it was definitely appropriate to say, "I'm so sorry, I feel bad for this situation, etc." But if someone looked at Lamp and walked up and said that to me know, that would be so inappropriate/offensive. Lastly, I think there is a world of difference between feeling bad about a situation and feeling bad about the person themselves. I have definitely said that I'm sorry a person is dealing with X, Y, and Z even in terms of a disability, but never when it is so directly tied to the person themselves. Like you, I don't know how to explain it but there is a huge difference. Which is why I also think its VERY important for all of us to extend grace and kindness to others. You have no idea how much I have to practice this day in and day out to other people who may or may not know better…I believe in giving people the benefit of the doubt and I do. Often. But when I have the chance to write something here for others consideration, I'll do that too.
Honestly, while I wouldn't have initially chosen this for Lamp, I would never take it away from her either. None of us escape life without major hardship. None of us. From my perspective, this 'hardship' ain't so bad. I'll take it. Yes there are limits, but show me a person without limitations and I'll show you a flying unicorn with leprechaun riding on it's back.
LOVE THIS! You've hit the nail right on the head, and I think unless you are a parent of a child with special needs, it's hard to understand how it feels when someone says "I'm so sorry" or "Bless her heart" when it come to your child and their special need. While I'm sure it's not meant to be, it very much comes off as being a "pity" comment. Thank you for sharing Miggy! 🙂
Yay its always so great to see your perspective and to have you respond to someone who clearly doesn't get it is amazing. Keep doing what you do.
Miggy, sometimes it’s the opposite. People think everything is fine with a kid and it isn’t.
In the blog winklett.com, the kid who looks fine physically is so violent that he can’t live at home.
In the blog specialmommyx2.com, one of the special needs kids has Rett syndrome. The symptoms torture the children day and night so the parents think the only way for their kid to not be in pain is to leave this earth.
My parents wonder why I can’t put my daughter with autism on a plane and go visit them just because they see calm videos of her playing on her ipad. I tell them it’s problematic enough taking her to a playground or McDonalds. Any plane we get on would make an unscheduled landing just to kick us out.
People don’t know. They react on what they initially see. You’ll probably need to keep patiently educating people that Lamp is perfect and happy just the way she is.
This is Mel in Fort Collins. I don’t know how to post this in any way other than anonymous.
Take care, Miggy.
it's a lot about exposure and education–13 years ago I started raising puppies for the "poor blind people". Um yea… never met one of those! By getting to know those in the disability community and learning more about disabilities my viewpoints did a 180! Oh I still raise guide dogs but I raise them for Jessie, Mike, Becky, Jordan, Maggie…..
"And even though few adults would ever say that they feel bad for Lamp, many, many people have expressed a sort of equal but opposite point of view, "Oh wow! She's really happy isn't she?" or "Look how happy she is!" Again, I know people mean well but I've heard this enough to know that some people are genuinely surprised that a girl like Lamp should be so happy. "
This made me feel shameful because a few months ago, this happened:
To make a long story short, my mom's pregnant coworker came back to the office devastated after having an ultrasound. The doctor was saying that the baby's legs were too short and that follow-up tests were needed. Follow-up tests that would not be available for THREE WEEKS!!! Needless to say, my mom's coworker was going through an extremely hard time during those three cruel weeks, and when my mom relayed what was going on, I immediately thought of Lamp. I actually sent my mom a link to all of my favorite Lamp posts (to forward to her coworker). My thinking was for the expectant mom to know that even if her baby was born with a limb difference, it would not be the end of the world. She could still have a just-as-beautiful, just-as-precious, and yes—just-as-happy—child that she had envisioned.
Do you interpret this as pity? Because pity does not enter my mind when thinking about your daughter, but "happy" does! (Just as I would associate "happy" with Lamp if she did NOT have a limb difference).
Christina–
No, not at all. As I said in a comment above: "As far as actually saying you feel bad for someone, I would say timeliness makes a difference…when I was pregnant with Lamp and we were coming to terms with life changing news, it was definitely appropriate to say, "I'm so sorry, I feel bad for this situation, etc." But if someone looked at Lamp and walked up and said that to me know, that would be so inappropriate/offensive."
Pity, empathy, sympathy are sometimes tricky to fetter out and distinguish. The last thing I want from this post–or any post–is to make people feel stressed or to feel really bad about how they may react, behave or even treat someone with disabilities. It was and continues to be a learning process for us. And I certainly don't have all the answers. I try to share these things to help people see things from a new perspective. I think what you did was wonderful and kind. Truthfully this family may not be ready to 'celebrate' their child's differences just yet. They may look at my blog and think, "Good for her, I STILL don't want this for our baby." Such a normal feeling for them and so nice and kind of you to reach out. So even if they don't seem happy or grateful to see my blog and Lamp,you did a kind thing and your heart was in the right place.
And yes I would associate happy with Lamp with or without limb differences as well! 🙂
Ugh–typo in my copy/paste… *now not know…