Disability, My Life

It’s all about perspective…

Every story has at least 2 sides and it’s always fascinating to look at the 2 (or more) sides to a story or situation and try to understand the “other” view.

We all look at a situation and only see it from one perspective, which leads to walking around blind to the other perspective without even realizing it.

As a person with a disability, over time, it’s hard not to get annoyed dealing with the things that people say or do as it relates to interacting with a person with a disability.

Well-meaning people haven’t thought through the implications of the words that they use, their body language or the ideas and thoughts that they hold in regards to disability.

Many times, disabled people find themselves on the defensive, trying to get others to understand that life as a disabled person isn’t a horrible existence filled with pain, loneliness or despair.

The problem is – all of us only see a story through our own eyes and experiences and we impose those thoughts and ideas onto other people.

Everyone does this. We create a picture in our mind about what life must be like for another person and because we only see it through the lens of our own experiences, we end up with a picture that is not accurate.

We will even go as far as to try to “help” someone have the same experience that we do because WE think what other person is experiencing must be awful.

I have reasonably thick skin so it doesn’t bother me too much, but every once in a while I read something or see something on TV or have a strange interaction with someone that just rubs me the wrong way.

Here are a few scenarios that can get under my skin when I hear or experience them. This isn’t mean to offend anyone, just help you think more clearly about attitudes toward disability that are pervasive in our culture.

Afflicted with…

Recently, I was reading a story in the news about another person with Spina Bifida and the title of the article used the word “afflicted” to describe the individual. He was apparently “afflicted with Spina Bifida.”

Afflicted is such a strong word to use when describing anyone, short of something truly awful, like perhaps what Job experienced in the Bible.

Let me clear something up for you. Describing someone with a disability as being “afflicted” is pretty offensive to the person, and you might not want to use it.

I understand that many with Spina Bifida have varying levels of mobility or developmental challenges and for an able-bodied person, it might appear to be an affliction.

But…to be honest, we (meaning people who were born with something like Spina Bifida) don’t know any different. We have come to terms with life as it is because any other life is out of reach.

A better way to describe this individual would be “a person with Spina Bifida”, just like I would describe a woman with purple hair, for example.

Wait a minute…having purple hair might actually be an affliction! 🙂

All that to say, I’m not afflicted and neither was the person that the article was talking about. His life was different than yours. He has to do things differently than you do…but he is not afflicted.

Maybe it just made for better click-bait?

Here’s a good example to illustrate what I mean.

I’m not sure what it’s like to run or hike…and I don’t feel like I need to know, nor do I feel like I’m missing anything by not taking part in regular hikes.

Except for an awful hike in Tobermory, it’s not an activity I do or want to do, but just because I can’t, certainly does not mean that I am afflicted.

Perhaps a better use of the word “afflicted” would be to use it when describing someone who gets a sudden, terrible illness that makes their quality of life almost unbearable.

Suffers from…

Another term that drives me a bit crazy is using the term “suffers from” to describe someone. Similar to affliction, it’s a strong use of words.

I’m not to saying you can’t ever use the term, but think it through before you say or write it.

I’m not “suffering from Spina Bifida” – I was born with Spina Bifida which is true, but it’s a pretty big stretch to say I am “suffering” from it because that would suggest it’s an ongoing, terrible experience…

I like to say that I get annoyed with some of the issues that come along with SB, but that’s about it. I’m not wallowing or suffering in my illness.

Again, if someone you know was diagnosed with a sudden, debilitating and perhaps fatal disease, then the word “suffering from” might be more appropriate versus a person who deals with a life-long disability that they have learned to live with and they know no different.

Unfortunately, the Merriam-Webster dictionary actually makes the connection between disability and suffering right in their definition. “to be subject to disability or handicap”

Does anyone know how to get in touch with the dictionary people to get them to change that???

Confined to a wheelchair…

This one is a bit weird and I’m not sure how it even got started. For wheelchair users, the wheelchair plays the role of their feet and legs. It’s the device that gives them freedom!

Would you ever say to someone that they’re confined to their feet? That doesn’t even make sense!

A wheelchair is a tool that actually allows a person with a disability to be independent, and given the AODA policies in Ontario and the ADA in the US, people in wheelchairs can go most places that they would need to go.

Over the years as my mobility has changed, I feel more like I’m confined to my feet, rather than being confined to a wheelchair when I use it. My back, my feet and my legs are the problems, not the wheelchair!

If you want to read a great article that sums up my thoughts on this, click here to read the Huffington Post article.

I’m sorry…

I’ve heard this one a few times recently if the discussion about health comes up and it always hits me when I hear it because there’s nothing to be sorry about.

Of course, we’re Canadian, and we say sorry to everyone for almost anything, but I don’t like hearing it when it relates to me and my physical state.

When I go to meetings with clients I usually book the meeting at a location that I know does not have stairs. I’m not great on stairs, especially lots of them, so I avoid them when I’m out and about.

It’s always weird when I get invited to a meeting at a clients office. I usually check out the address on Google Street View and make sure I can find parking close enough and if I’m not sure, I will also ask if there are stairs, just so I know what I’m getting myself into and I explain that I’ve been having some mobility challenges.

After explaining the situation, I’ve heard on more than one occasion – “Oh, I’m sorry.”

I guess it’s an appropriate response – like, what else can you say? I get it.

But it catches me off guard all the time because it’s not something I’m feeling sorry about – it’s just part of life, like getting grey hair or growing ear hair or eventually becoming a bad driver.

You’re inspiring…

This is another weird one, and I don’t know what to say when people say it to me. I’ve heard it a couple of times in the past few years…

Why exactly am I inspiring?

Is it because I have the guts to wear Camo Crocs in public?

Is it because I’m stupid enough to have travelled to Florida with almost no money?

Is it because I was naive enough to purchase a grocery store?

OR…Is it because despite having a slight disability, I work, I’m married, I live in a normal house, drive a car and generally have a normal life?

If that’s it, that’s not inspiring. 🙂

The real trouble is that the bar has been set so low for people with disabilities, that when you see someone with a disability living a “normal” life, it seems inspiring. But it’s not really. It’s just life.

What’s the other option? Lay in bed all day thinking about our physical impairments?

I don’t think so.

We all get out of bed every morning, get dressed, put on our Crocs (the stylish guys do this) and face reality, just like everyone else.

I’m thankful that I had parents and a sister that treated me “normally” so I never grew up in a setting where nothing was expected of me.

I had friends, who in most cases were smarter than me and did not have a disability. That was actually helpful in pushing me to learn and to integrate. Call it positive peer pressure, but it really is awesome when true integration happens, rather than segregating kids with disabilities into groups.

I get that not every person with a disability has the ability to live what you would call a “normal” life, but on the flip-side, many people at any ability level (disabled or not) live far below their potential – because that’s where the bar was set.

And…you know what you get when you expect nothing from life, or from kids? You get nothing!

From my perspective, I haven’t accomplished anything inspirational in life – other than convincing a beautiful girl to marry me! I suppose that could be inspiring – I’ve given hope to a world full of geeky men… 🙂

I’m not afflicted, suffering from, confined to or inspiring…and there’s nothing to be sorry about. 

I was reminded of how different people view different situations when I went to see one of my least favourite people. My Urologist.

To be fair, he’s not a bad guy at all. He’s actually quite nice and a very good doctor.

But…who really wants to be seeing a Urologist at all? And who wants to go through any sort of testing as it relates to your plumbing? I’m going to guess and say – No one!

We had a discussion about my bladder and kidneys and their basic level of function or dysfunction – depending on how you look at it.

He offered up some solutions that might make my quality of life better in his eyes. But they came with pitfalls as well and the trade-off didn’t seem worth it to me. He seemed surprised when I was willing to accept having to go pee every 2 hours over another solution.

At the end of the day, we came to the conclusion that I’m satisfied with my current function/dysfunction. There are things that might help…but they could also cause further problems that I don’t really want to deal with right now.

To me, I don’t know any different. I’ve learned to manage it. I manage the places that I go, I manage what I drink and I keep a close eye on the available bathrooms and it’s fine. I can deal with it and it’s not a big deal.

The other options that were presented didn’t seem any better than what I currently know as “normal” and there was potential for other issues so we’re going to leave it the way that it is.

It’s all about perspective.

What you might view as a difficult circumstance, may not actually be difficult or concerning for the person experiencing it because they don’t know any different – and somehow, God gives us the grace to endure it.

My quality of life is above-average in my opinion!

I’m sitting in Starbucks, drinking a dark roast…typing away, answering emails, writing this blog post. I parked in an accessible parking spot, just outside the door. Pretty lucky, eh?

That doesn’t sound much like affliction, does it? There are a lot worse situations to be in, that’s for sure!

I might not want YOUR life…

Sure, things are “different” for me than they are for you – but on the flip side, have you ever thought that I may not want your life and your challenges?

If you have a job where you sit in a cubicle, 8 hours per day, 5 days per week (no matter how much you get paid) I see that as an affliction. I feel bad for you…

In your spare time, do you do home renovations or landscaping, cut your own grass or shovel snow? I feel bad you. I’d call that “suffering from being able-bodied.”

See. It’s all about perspective.

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