When It Comes To Sympathy, Pity, Understanding- The Differences Are Subtle, But Important

Confusion, chaos of information image intended to indicate so many opinionsWe live in a complicated world… It doesn’t take a rocket scientist to figure that out.

Social media gives voice to so many opinions (as this blog does for us) and just as many differing points of view.

I shared my recent experiences on adjusting to getting around in a wheelchair after a fall.

From Facebook to Twitter to Tumblr– the amount of interest and diverse thoughts these posts on disabilities and aging have generated has been incredible.

We seem to have touched a collective nerve.

It’s been enlightening to get a sense of other experiences out there.

expatlingo on July 2, 2014 at 1:17 am said:

I’ve actually been thinking about how to talk about disability with my kids and this is very helpful in terms of clarifying my thinking and approach!

Good advice for everyone – “acknowledge the person first”.
Thanks for giving us a view from the other side.

From Facebook, another friend commented on similar personal adjustments:

I enjoyed your article about the wheelchair experience. I’ve been … 5 weeks although now on crutches for a few more. I’ll be up and about in another month  … more tantrums in the first couple of weeks than I had my whole life.  Also, no one mentions how sore your butt gets from sitting in one – do they?

.
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Such different aspects each reader identified with… though not all of the feedback comments shared such views.

But, that’s what makes this a conversation, not simply a rant.

[Thanks for your contributions to the conversation @mosaichomecare, @Vida_SpCare, @HelpAge, @SCaregivers, @OregonDHS, @toddocracy, @arthurandbernie, @CDS_Sydney, @IntDisability, @ECAatState.]

On Tumblr, Ficdirectory (posted on reignite all the souls) took exception to a particular sentence of mine. Fair enough. I plead guilty to not realizing how that would sound to people with disabilities. Fic’s About page does tell me clearly to be careful:

– And you should probably know (if you don’t already) I’m really passionate about accurate representation in the media when it comes to people with disabilities. I have a low tolerance for ableism and I blog about it when I see it. Though I also blog about positive representation and awesome pictures or stories about people with disabilities. It’s really a passion of mine.

Here’s my offending phrase and Fic’s considered response:

I can understand how easy it would be to slip away and just give up, if this is what I had to look forward to, as in forever.

On the contrary, I think you’d find that you, like so many of us who are disabled, would adapt. I’d encourage you to continue educating yourself about people with disabilities. Read blogs and accounts by people with disabilities. If you find someone willing to answer questions, and dialogue with you, listen to them.

We are living our lives just as you are. We don’t need pity. And publishing insights that focus on how negative an experience you had temporarily being in a wheelchair is really harmful. Because while we all have down days, most people with disabilities are not constantly overwhelmed by the sadness and negativity of our circumstances.

Respectfully, I don’t need your insight, as an able-bodied person, on what it’s like to use a wheelchair temporarily. I need you to listen to people for whom using a wheelchair is an everyday reality and get an accurate representation of what living with disability actually is.

Fic interpreted my personal thought process of coming to terms with something I had never experienced before as pity for people with disabilities.

I could protest that it never crossed my mind to feel pity. But I get that, just as my words were perceived as inappropriate by Fic, for some people with disabilities, there may be reason to take exception and I should continue to learn how to speak accurately on this subject.

Point taken.

Image of a man in a wheelchair crossing railroad tracks in a road: Do I understand this situation, pity the man, or sympathize that things are this way?

What Do You Feel- Sympathy? Pity? Understanding?

That begs the next questions, then:

How do we define sympathy (empathy), pity, and understanding?

How can I choose the right words that reflect the differences?

Do we all understand those differences in the same way?

Fic tells me that instead of acknowledging people with disabilities, I should understand that we are all just people doing what we do, getting on with lives that all have value.

.

That’s exactly what I had hoped including Mike Carmody’s (Chicago Tribune article) quote would indicate, ““At the heart of the problem is that “people don’t acknowledge the person first; they acknowledge the disability”. 

That I have been treated differently since my accident myself told me that others likely also experience this on a daily basis by virtue of age, disability, and a host of other circumstances.

My whole point was exactly what Fic is saying, we should be just “people,” not defining categories determining how we interact. On that I believe we agree.

Fic continued later to another, in a conversation response on boundaries for personal questions:

When able-bodied people sustain a temporary injury, it’s common to ask what happened. It’s an act of concern. And if you’re friends with a person, and you know they got hurt and will need to use crutches temporarily, for example, I’d say it’s perfectly acceptable to ask after them.

The issue comes when you are approaching people you are not familiar with, number one. You are strangers to us. We don’t know you from the next random person, and explaining our personal history IS invasive. The second thing to keep in mind is that you asking a disabled person “What happened? Why are you in a wheelchair?” for example, feels to US, the same way it would feel to you if a complete stranger approached you on the street, with concern and pity on their faces and asked you, “What happened? Why are you walking?” Wouldn’t that be off-putting? It is to us, too. Because for a lot of us, nothing happened, it’s the way we were born. It’s normal to us. (And if something DID happen later in life, it’s completely our business when or if to disclose or discuss that.) Now imagine that too many strangers to count have approached you with similar sentiments over the years. Imagine that you were asked these kinds of things as a child, by adults.

Does it feel a little violating? Do you think you might have a reason to feel angry, especially  if it didn’t just happen once, but over and over?  We are people. Human beings. We want to be able to go out in public and not have this happen to us either. We have lives to lead and things to do just like you do. And we want to do the things we have to do without feeling self-conscious or fearful of strangers asking personal questions – even well-meaning questions.

I don’t take issue with you personally, but would really encourage you to educate yourself. Listen to what people with disabilities are saying. We’re not all the same, but I’d bet there are common threads in a lot of our responses to your questions.” 

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I’ve learned a lot by reading Fic’s posts.

As with each expat experience I’ve had in my life, or shared through your blogs and comments, this is a good learning situation, another Life Lesson, an “Aha!” moment- which is, after all, what I came here to share.

So here are my take-aways:

  • I understand that Fic is one person, with one point of view.  Fic’s experiences are just as, not more or less, definitive for the entire community of people with disabilities than mine are for those in any other circumstance.

When my step-father went into the hospital  at age 45 for a blog clot in his leg, he never thought he would come home 6-weeks later as a paraplegic. I watched him wrestle with the realization that this was his life. He would never go back to work at the railroad.

He had prostheses made, but I never saw him use them. They asked him how tall he wanted to be, since he got a choice. He chose to become 6’1″. Heck, he even got a pair of dress shoes and a pair of “trainers” as if he was going to run or play tennis. As if. But it never happened.

My original comment reflected what I saw him go through. It was based on what I knew to be a possible outcome for some, my own experience seeing him give up. He died far too young.

I can understand how easy it would be to slip away and just give up, if this is what I had to look forward to, as in forever.

I could have elaborated on that aspect of my sentence; that, too late for him, I could finally understand, relate to his world.

  • “We are living our lives just as you are. We don’t need pity. And publishing insights that focus on how negative an experience you had temporarily being in a wheelchair is really harmful. Because while we all have down days, most people with disabilities are not constantly overwhelmed by the sadness and negativity of our circumstances.

Fic implied I was offering pity. I intended to identify, sympathize, even empathize. I had a glimpse of the range of emotions my step-father went through.

But I certainly wasn’t feeling sad or sorry for every person born with a different set of circumstances.

Respectfully, I don’t need your insight, as an able-bodied person, on what it’s like to use a wheelchair temporarily. I need you to listen to people for whom using a wheelchair is an everyday reality and get an accurate representation of what living with disability actually is.

I was writing to people who, like me, may never have had the ability to see life from any other perspective than their own- able or other.

Fic, my insights may not be of interest or of value to you, but it seems from the comments that for others they might.

If I am not writing to you, then meet me where we have common ground and use this outlet to help build a bridge.

How can I (we) “listen to people for whom using a wheelchair is an everyday reality and get an accurate representation of what living with disability actually is” if when we try to open the conversation, we’re told how unhelpful the conversation is?

The conversations may not be ideal, but to my mind, anything that stimulates the dialogue about how people relate to one another, how things we say to each other can help or hurt, how our actions might be misconstrued… well, to me that’s a step in the right direction- whether we take that step in a wheelchair, on crutches, prosthetics, or original equipment, it’s still a step in the right direction.

Fic, sincerely, thanks for sharing, for weighing in on what I got wrong and encouraging me (us all) to continue to listen and learn.

I appreciate the Life Lesson you’ve shared and the chance to air our thoughts with a wider audience.

Ok, readers, Your turn to weigh in!  Did we make things more clear or just more complicated? What are your take-aways here?

I look forward to hearing more…

 

 

 

 

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