Monthly Archives: January 2015

Saturday

On Edge:

Plagued by what ifs…
Weather watcher.
A quick smile;
Gleeking plus bagels.
Fun tunes.
Lazy bones;
Awash in hopes and dreams.
The fog takes the city…

*And that’s as articulate as Saturday gets this week, friends 🙂

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The Sammy Shuffle: part 8

No Joke:

People are ignorant. The internet really hasn’t helped in regards to the casual dispersal of misinformation and snap self-diagnoses. People who actually live with these conditions and have a clear diagnosis now have to overcome the skeptics made by others who acted on prejudice, misinformation, misunderstanding or a simple lack of knowledge. How do you know? Who do you take seriously and who do you tell to take a hike?

People say things like, “Service dogs are only for blind people,” “Are you crazy?” “I’m depressed,” “Little Johnny can’t sit still for more than 5 seconds at a time, I think maybe he has ADHD,” “My mother’s cousin’s stepbrother has Aspergers- he’s a little weird, but brilliant,” or “If you just tried harder (or ate your veggies)…” and it makes things hard. How do you differentiate between the person who is just looking for attention, the one who needs be given an education in disability studies and some sensitivity training, and those who may actually be living with a condition(s) or are searching for a diagnosis or explanation?

I recently met a lady on the bus who had lost her keys. I offered to help her look for them. “That would be wonderful,” she smiled, “Early onset, you know? Sheesh!” I thought she was joking; it’s the kind of thing people say all the time, but after we talked some more, I wasn’t sure. And I was too shy to ask outright if she really did have early onset Alzheimer’s. We found the keys.

 

The Sammy Shuffle: part 7

Invisibility and Disability:

If your disability is invisible, people tend question your diagnosis (and your sanity), and those who don’t know any better will treat you like everyone else — which, in this context, is a bad thing. Because no matter how small the adaptation or how minor the accommodation, it is designed to make your life easier, to level the playing field, to encourage active participation. Without knowledge of your disability, no adaptations will be made, the difficulty increases and participation decreases. Positive learning does not take place. This is not good!

I did try navigating that high school hallway crutch-less. Multiple times. And people took no notice. They shoved and jostled and squeezed. And I fell on my butt, or got plastered up against the wall. It was very entertaining; I know these people, they know me. They know about my disability and why I use crutches, but without the crutches, I am treated like everyone else. Going crutch-less in that hallway was stressful. It made my life difficult and it made me late for class. I feel more “normal” with crutches than without them. But some people don’t see it that way.

I have a friend who is visually impaired. She dislikes using a cane, and has admitted that this is because she wants to be treated the same as (“normal”) sighted individuals and if people saw her with a cane, they would treat her differently. This is true. BUT IT’S NOT A BAD THING!

My friend is an amazing, vibrant, confident, funny person, with so much to share. But she can’t see. And she doesn’t want other people to know that she can’t see. And other people don’t know. So when she knocks something over or bumps into someone in the store, or shuffles along the sidewalk, people often assume she is careless, clumsy or rude. It’s really slow going, and there are a lot of questioning looks. Outings are a lot of work- trying to pass as a “normal” sighted person, when in actuality you can’t see very much at all is draining. So, nine times out of ten, rather than meeting at the local coffee shop, I go to her house to visit. And her world shrinks, bit by bit.

This shrinking process is really difficult for me to watch. Because it’s not worth it. The “normal” charade is frankly ridiculous. It is mentally, physically and emotionally taxing, limits independence and leaves people with the horribly wrong impression that my friend is careless, clumsy and rude. And it absolutely does not have to be that way. Take advantage of the supports that are out there people. Find what works for you. Small adaptations can make a huge positive difference.

The Sammy Shuffle: part 6

Visibility and Disability:

For me, being visibly different is more of an advantage than a disadvantage. My crutches make me visible, they allow me to go more places and do things that I wouldn’t be able to do as easily without them. And they make people take notice. The best possible example I can give of this, of the advantages of having a visible disability (and using crutches or another aid) is my first day of high school- any day in high school really.

My high school is small, only 800 students in total. But just wait until the bell rings, “Class dismissed!” and all 800 of us spill into the the hallways and the 5 minute mad dash begins as we scramble to make it to our next class before our respective instructors lock their doors shut and begin their lessons. In the hallways it gets a little crazy. And a little cramped. And hard to move. With crutches and a few loud “Excuse mes!” however, it gets much easier. People give me space- not a lot, but enough.

I can, and do walk without crutches and I can get around fine without them. But, it is a lot harder, it takes me a lot longer, the chances of my landing on my butt are much higher and I wear out much much faster. Walking a few blocks to the mailbox and back on crutches takes me five minutes and has no impact on my energy level whatsoever. Walking without them takes 10-15 minutes and feels similar to doing a running sprint in the pool.

I have no problem going crutch-less for short trips, or standing or sitting all day, or being up and down all day. I have worked 8 hour shifts standing behind the register at Mike’s Gelato, I have spent days in the offices of On Q K9 Training and Canadian Mental Health on the computer, answering phones, standing to make copies, running to get the door and escorting people back and forth, but for walking/running continuously or for long periods I need and prefer to use my Sidestix.

Using crutches makes me visible. It helps me to be more independent, I’m pretty easy to spot in a crowd and it is a great conversation starter. It also provides excellent proof to anyone who might ask, that yes, I do have a disability and some minor adaptations may be necessary. And while there are down sides to being so obvious, such the stares (and the stairs), fast judgements and relative difficulty of blending in with the crowd, the pros significantly outnumber the cons.

The Sammy Shuffle: part 5

Social Models and Stereotypes:

In this video, Stella Young says she subscribes to “the social model of disability, where we are more disabled by… the society that we live in… than by our bodies and our diagnosis,” and I guess I do too. Society restricts me more than my diagnosis does.

Of course it would be wonderful if all the world was truly accessible, and we as a society stopped needing to put labels on people and squeeze individuals into ill-fitting one-size-fits-all categories. A society where people could stop obsessing over what category they need to qualify for to achieve their goals and the labels they get slapped with (extremely disabled, moderately disabled, disabled, able-bodied, underachiever, overachiever, normal, inspirational, superstar) and just be themselves. A society where people could thrive with proper support and understanding. Unfortunately, we are not quite there yet. So, we have to work with what we’ve got, and try our best to create positive change.

One of the easiest and most interesting ways to do this? Walk out your front door, or hop on a bus! These are my two main forms of transportation, and I meet a lot of interesting people. In a society where disability is not the norm, where it is often misunderstood and even feared by a great many people, I have the opportunity to engage with those I meet, share my experiences, answer their questions and hopefully leave them with a better understanding of who I am as a person — it’s not that hard really.

There is so little good information out there regarding people with disabilities. In addition there is not really an established (positive) day to day kind of presence to combat some of the common stereotypes and public misconceptions. I find that more often than not, I am the only one using the elevator. I haven’t come across very many disabled professionals. And I’ll admit that when I do occasionally meet a fellow person with a disability (PWD) I find it hard to contain my enthusiasm 🙂 A kindred spirit! May I ask what your diagnosis is? And how many stares have you received so far today? You managed to make it out of bed this morning I see, congratulations! The bar of achievement is set pretty low for us PWDs, so improving a person’s understanding of my disability is not difficult.

“What’s wrong with you? Did you break your legs?”

“I was born with cerebral palsy. It affects different people in different ways, but for me it means the muscles in my legs are tighter than normal. I use crutches to help me get around faster.”

**And no, I’m not in pain. The condition is not contagious and it doesn’t get any better or worse. My intellect is fully intact. No, I am not waiting for a lung transplant, that is cystic fibrosis, not cerebral palsy.

“Oh. Where are you going?”

“I’m studying in the Arts and Sciences program at Capilano University. I am headed to Criminology class.”

“That sounds interesting! This is my stop. Have a good day!”

“Thanks, you too.” 🙂

If I’m lucky, maybe some of what I said will stick, a part of my message will have gotten through: CP affects people in different ways, I don’t let it stop me from living my life, and I love to learn new things and meet new people. Life is pretty great!

Distracted

Distract. Distracted. Distractedly… That was today in a nutshell. The reason? Beats me…Yesterday was fine. I ate well, slept well, got all my homework and readings done and all my ducks in a row. I was all set for today to be peachy. But I woke up and felt off. I was distracted the entire day. Objectively, I got a good amount of stuff done. Subjectively, it was not one of my better days.

Geography was particularly excruciating. I tried to zero in on the topic of interest: Plate Tectonics (which I am actually interested in and think is pretty cool). I couldn’t do it. I don’t know if it was me or the prof, or WHAT… but somehow the “brief” review of this Theory and its basic principles, which we all have been studying practically since kindergarten, got turned into this mind-boggling monstrosity of a “discussion” that lasted over an hour. It was not fun. I learned nothing. I actually think some brain cells died 🙂

Well, I don’t know how many paragraphs fit in a nutshell. But I think I’ve said all I wanted to say. Here’s to a better tomorrow 🙂

Goodnight!

The Sammy Shuffle: part 4

The Right Word:

This is a debate I’ve been having with myself. My observation is that the world is currently undergoing a labeling and terminology crisis. There are so many labels and terms, and we just keep inventing more of them. And it makes things so bloody confusing!

They are created in order to define something, they are designed to be current and correct and specific. Unfortunately, often these labels and terms are used incorrectly, in a haphazard, general manner. They become interchangeable with one another; so we create a new label, a new term, and the confusion continues.

Some people say challenged, others use the terms disabled, handicapped, differently-abled, handi-capable, special… And can I just say that I prefer the term disabled? To me it offers the simplest and most accurate description.

Yes, I realize people everywhere have challenges. I understand that while some terms may be considered insensitive, others attempt to raise awareness and change public attitudes. But for me the term disabled works. It doesn’t define my whole being, but it is a part of who I am. It is an accurate assessment. It is a statement of fact.

I have a disability. My condition restricts my ability to carry out some daily living activities as easily as the average able-bodied person- and so I adapt. I am not trying to hide anything. I am not trying to “pass” as “normal.” I am confident in my abilities and have nothing to prove.

The Sammy Shuffle: part 3

True Stories:

I read Rick Hansen’s autobiography, Rick Hansen: Man in Motion for the first time when I was 13, and I’ve reread it several times since.

Now, I’m paraphrasing here, because I can’t find the exact quote in the book. But I thought it was very profound – and I still do, that everyone has their own journey and their own challenges and if one person’s story garners more attention than another, it doesn’t mean that that person’s story is any less significant.

The example given in the book, as I recall, was a comparison between Rick being the first person in history to successfully circumnavigate the world in a wheelchair, which is impressive by any standard, and the efforts of a patient(s) in physio relearning how to throw a ball or take those first few unaided steps after a life-changing event.

Circumnavigation of the globe in a chair most definitely would (and did) make the front page news. It took dedication and determination and teamwork. It had a big impact on the lives of many people. And the exact same can be said for that ball throwing physio patient, though it might not make the front page.

And I think that the stories of people, whether they are in the public eye or not, are not recognized in the way that they should be. I wish we could get to know people, get to know their stories and to have meaningful conversations. To share and connect, as human beings and really learn from each other as opposed to judging one another based on what we think we know.

The Sammy Shuffle: part 2

An Object of Inspiration:

I have been thinking about this a lot lately. To be honest, I have been thinking about a lot of things a lot lately. I recently came across this video of Stella Young (click here), which I think makes some very valid points, the main one being that disabled people do overcome obstacles, but often they are not the obstacles able-bodied people think we are overcoming. The things many abled-bodied people view as inspirational when done by a disabled person- such as running or painting or getting up in the morning- these things are often not considered major inspirational achievements by the disabled individual(s) in question, we are often simply living our lives, making things work, adapting to the best of our ability.

That is not to say that life as a disabled person isn’t hard sometimes, or that some everyday activities aren’t more complex or require more thought or work or planning to complete than someone who is able bodied. For example, some things (like walking), happen almost automatically, they are no brainers for most people. For me walking is not a no brainer. And I get congratulated on this all the time, “Wow, you are walking so well. You get around pretty good, eh? Good for you!” The problem I have with this is that these comments are reflexive, they are reactive. A person on the street sees me walk by and thinks: “Wow, a disabled person! Isn’t it wonderful that she is getting out and engaging with the world despite her obvious challenges, poor girl. How inspirational.” The people who make these comments mean well, but they miss the point. They are inspired, but they don’t learn anything. And it is up to me to teach them. To give them my “Disability affects everyone differently- this is how it affects me (and my life is pretty great and pretty ordinary, thank you),” speech.

In this context, I fully support the statement “Disability does not make you exceptional; questioning what you think you know about it does” and I agree that as a society we need to move away from “inspiration porn.” I believe we need to respect and support disabled individuals to a greater extent, and work to reduce the number of barriers that exist for disabled individuals in society. We need to begin to move towards a world in which disability is the norm, where genuine achievements are recognized, where people are open not just to being inspired by, but to learning from one another.