Disability Twitter Trend #WhenICallMyselfDisabled | Little Miss Turtle | Wheelchair Travel Blog and Life with LGMD

Disability Twitter Trend #WhenICallMyselfDisabled

The recent post “When I Call Myself Disabled, Your Opinion Doesn’t Matter” by Imani Barbarin, aka @crutches_and_spice, inspired me to write this article on perceptions and disability.

 

Growing up with a disabling disease

At the age of 4, I was diagnosed with a rare and progressive disease called limb-girdle muscular dystrophy. At that time, I could walk and fool around like other kids. However, I had never been able to run. I could use my bike and I even got to go skiing once or twice. Of course, I loved it! What I would not understand though were some adults comments in recurring situations. I will forever remember how they would finger point at me and accuse me of being too lazy because I would stay on the ground after a fall, unable to get back up on my feet.

 

Melanie lives with LGMD2i | Little Miss Turtle | Wheelchair Travel & Life with LGMD

My waddling walk didn’t stop me from being an active child

 

I guess that it is precisely at this young age, that my understanding of how ignorant the outer world was about disability began.

 

Learning the hard way that I was “different”

The funny thing is that in my reality, I have never seen myself as so different from the rest of this world. Of course, I perceived some variations in my physical abilities, but I never felt diminished by them. That was that!
As a teenager, I used to hang out with the cool kids, or so I thought! I wasn’t having the time of my life, but hey, … At least I fitted in, or I thought I did. I used to feel so cool smoking with the other girls. But how cool is smoking when your myopathy doesn’t only affect your limbs but also your heart and respiratory muscles?! But at this age, being disabled or not, you’d turn to a contortionist and abandon your genuine self just to fit in.

 

Disability & Employment

Later on, after my studies, and as I became a young adult, I was hired at a physical therapy practice as a secretary. Without a doubt I was among their best employees. Yet after a few years, I realized I was paid even less than the cleaning lady. I talked about it around me, but people (including my own family) seemed to think that I should be happy to have a job at all in my situation. At that time, despite some very basic adaptations, I would have gladly appreciated in my working space, if only my boss had allowed them, I still was quite independent and could walk pretty steadily. Call me naive, but again, in my reality, I wouldn’t understand why people were so indifferent. All of this felt extremely unfair.

 

Being bullied at work by someone who should protect you

As if underpaying me was not enough, my female boss was a real bully. I’ll spare you most of the mean things I heard from her. Nonetheless, one day she comes to me and says she wants to see me in her office. She had decided that she no longer wanted to take the risk of me walking around. And that from now on, I would have to work in my wheelchair and stay in it. Plus, this would save on her insurance fee. Honestly, I was shocked and in pain after hearing this. It took me a few days to process, but this time she had gone too far. I gathered all my strength and courage and resigned. To this day, I still can’t believe her reaction:

“Are you sure you wanna leave? You know that you’ll never find another job with your disability, right? You should be grateful that I hired you in the first place!”

Although this tremendously disturbing and painful experience left some scars, I now see how powerful and necessary it was to help me drop the “let-me-show-you-how-worthy-of-your-approval-I-am” pattern.

 

Resilience

This experience introduced me to the notion of resilience or more precisely to the word itself, as I realized that this ability had been in me all along. Resilience allows you to understand situations for what they are as a whole. No situation, no experience is all black, nor all white. I believe what most people don’t understand, is that our most precious human potential, creativity, can never be taken away from us with a pair of legs, an arm, sight, hearing or any other circumstances labeled with a “disability” tag.

 

Perception & Misunderstandings

I often have the feeling that the vast majority of people (without disabilities) would rather be dead than disabled. For me, this mindset reflects a huge misunderstanding and a profound ignorance over a simple denomination. An excellent indicator of the level of misunderstanding in an encounter is whether or not he/she places the following statement in a conversation:

“You are such an inspiration!”

You see, what this phrase really means is “I don’t know how you do it! If it was me, I couldn’t go on with my life!”.

I could go deeper in the rabbit hole of the eternal illusionary perception of persecution. But what good would it do me or anyone else? In the same way, that peace will never come out of war (and the people who call themselves warriors), but only from peace itself, I trust that tolerance can only grow through those, who choose to become tolerant without any strings or claims attached.

 

Discrimination is not exclusively disability-oriented

If we take a step back and open our minds, it is quite likely that we will realize how discrimination is not exclusively disability-oriented. Today, many other communities suffer from a kind of inequity. I believe, that for as long as mankind will keep on fabricating illusory barriers, boundaries, frontiers, and walls, instead of bridges and communities, genuine inclusion will never become anyone’s reality.

Social stigmas are heavy to carry, but this reality applies to everyone, including people with no disability. Our whole society is based on reaching so-called “excellence” through exclusivity and competition. In these circumstances, you don’t need to have a rare disease to be over-looked at, bullied or mocked.

 

Disability & the thing with the inclusion

Inclusion needs to start at school. Not by hypocritically adding a one-hour course on the theory of the importance of inclusion! The whole education system needs a complete makeover, if not a brand-new start! Raising is about growing and growing takes time. So why not introduce the notion of harmonious silence and teach kids the art and benefits of listening to their classmates?

If you think I’m getting a little too off-topic here, let me ask you this: Wouldn’t it be somehow delusional to expect profound understanding and respect from people who are constantly reminded (through education, institutions, work, media, advertising, entertainment, etc.) that competition and performance are the only values worth “fighting” for? And that being at peace and happy with who they are (really) is totally secondary, if not completely forgotten?

It’s our choice

So, Inclusion: YES! GO FOR IT! But first, instead of repeating the same mistakes over and over again, let’s not be too judgemental about those who judge us (often without even being aware they do). Whether we are offended or not by someone’s attitude or words is our very own choice.

Would you be offended if insulted openly by someone totally drunk laying on the floor? With a minimum of intelligence, you’d hopefully simply move on.

Ignorance is quite similar to alcohol. They both considerably and negatively impact a mind and ones ability to reason. From this understanding, it is up to us to choose to respectfully and intelligently educate a person encountered or to just move on.

It belongs to us to make a difference by not making a fool of ourselves by abasing to insignificant childishness. You want to be respected for your mindset and intelligence, act accordingly.

 

Belief & Confusion

Emotions sometimes trick us into belief and confusion. A few years back, I came across this saying:

“You never know how strong & capable you are,
until being strong & capable are the only options you have.”

It always amazes me how easy it is for us to assume, that these words were made for us, but also how difficult it is to turn things around and try to understand that sentence from another standpoint. This saying clearly also means that not everyone has had the “opportunity” to grow from a life-changing experience. Of course, this does not justify the absurdity, stupidity, or inconsistency of some stranger’s words, but it should, at least, allow us to put their limited knowledge into perspective.

 

Putting things into perspective

Putting things into perspective helps me go beyond statements that I sometimes take too personally. Over time I have also noticed that most of my “strange encounters” have no real intention to hear your story as it is and for what it is. Rare are those who engage in conversations about my disability to genuinely learn something about it! Nevertheless, people who do often prove to be comfortable with who they are. These people usually have bravely confronted the essential questions of life, off the beaten tracks… again, these persons are too rare.

 

Disability & Social stigmas

The social and cultural stigmas create the realities we live in. These realities are tough on people who progressively forget to check on their inner child to make sure everything is alright with them. By forgetting to do so, people start to add more and more concepts and tags to their reality. All these (unnoticed) labels progressively become their norm.
Exclusion, the way I see it, is not the exclusive dilemma of people with disabilities, nor minorities. Exclusion starts at childhood for every single person. The only difference is that people with visible or perceptible disabilities have nowhere to hide to line up to society standards. They are forced to find a way to embrace themselves for what they truly are. They have no choice but to call a spade a spade.

 

A simple matter of vocabulary

In the end, could it all be a simple matter of vocabulary? The misuse of the word “disabled”? Now, that this buzz has caught my attention, I realize that I have never thought of myself as disabled. Maybe because of the more or less unconscious, negative connotation stuck with the word “disabled.”
In some people’s mouth, the word “disabled” sounds like “limited” or “useless.” The truth is, I have never seen myself as useless, and whenever my limits are reached due to my disability, I use my brain trying to find solutions to overcome these limits. But more importantly, if my limits are reached and I find no solution, I just accept a reality in which I have limits. I don’t need to hide behind a #NoLimit attitude, a concept I have no faith in.

 

Victims & Tyrants

Let’s be honest and keep in mind that strange, weird, rude, discriminant, and undereducated people are not the privilege of a community, who some refer to as the “able-bodied.” Let’s not fool ourselves in believing that some are the victims and others the tyrants. Again, the more community-labels, the more division, and separation between mankind! Arrogance, stupidity, and ignorance have no boundaries, no color, no gender, no social status, no nationality, no religion, no specific job, and so on… Whether we choose to admit it or not, these attributes are a part of every single one of us. We just don’t all express them with equivalent intensity, nor in the same manner, nor under the same circumstances.

 

#DisabledCompliments

Like many people affected by a disability, I have heard some pretty messed up stuff. However, “one rules them all.” This one wasn’t expressed to me directly. Actually, it took my husband over a year to tell me about it. Someone from his family had taken him aside one day to state: “It’s a good thing you and Melanie come to visit. Step by step it really helps me to get over the whole wheelchair thing…” This man’s dad had had his two legs amputated tardily. So, he added that he had “come a long way,” as in the past, he couldn’t stand seeing his (now deceased) father in a wheelchair.

 

A husband’s contribution

When I told my husband that I was about to write an article based on Imani’s blog post #WhenICallMyselfDisabled, he immediately said he wanted to contribute. I love it when he does that! This man is always so encouraging and supportive of whatever project I have! So here are his thoughts.

A wheelchair is just a chair with wheels

When I first saw Melanie, her beautiful smile shined so brightly that I barely noticed her wheelchair. For me, a wheelchair is just a chair with wheels. If she needs it to get around, so what! After all, so many people need their car every day to go to work, because they can’t run fast enough to get there on time…

 

Interabled couple about disability | Little Miss Turtle | Wheelchair Travel Blog | Life with LGMD

“A wheelchair is just a chair with wheels” © lmt

 

Do I stare with my eyes wide open, filled with pity and elaborate on how sorry I feel for them, if only they weren’t so disabled? Seriously, how ridiculous would that sound like?!

 

Perceptions & Limits

However, I have to admit something. When Melanie and I met, she could still walk. In her own waddling way of course, but yet, walk! This walking of hers was to me very… unexpected! But hey, it was new!

So I decided to keep this to myself and give it (me) some time. Besides, her vibrant smile remained intact as she walked around. I could definitely perceive that for her, everything was absolutely normal! So I figured that after all, this perception was mine. And therefore that it was mine to carry and work on. Which I did.

Eventually, after a while, I got completely used to it. My very own perception had gained some hight, and what seemed abnormal at first became all that is most normal in no time. Simply because I had chosen to accept and see MY own limits!

 

People & Compliments

We often (if not all the time) hear, how lucky Melanie is to have a caring and loving husband such as me. On the other hand, (I apologize in advance if you, who is reading these words of mine, are single-handed), we hardly hear from someone how lucky I am! And if we do, the compliment is generally related to her beauty or her smile.

 

All that matters

Well, let me stress this out for you:

Melanie has a brilliant mind and a brilliant heart! She is so much fun, and life by her side is so sweet and simple! Of course, we disagree and argue sometimes, but this never lasts very long, thanks to her incredible resilience! If only people knew her soul, they would never exclusively focus on her physical limitations ever again. But at the same time, I would never get to be the “hero” again! This woman is one of the two most precious gifts the universe has ever sent my way!

For me, today’s globalized society is seriously ill, and too many people are stuck in an illusionary quest of performing life rather than simply living it. The whole process makes them blind to what is essential.

 

Any thoughts about being disabled? Leave them in the comments!

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4 comments

  • Amen, amen and amen! Thanks for sharing from your hearts, and being clearly honest about life (no qualifier about life with disability).

  • Dorothy Sconiers 19/07/2019   Reply →

    Nice. Wish there were more people like us in this world. I have lgmd2l. Unlike you my symptoms began middle age 47. I’m now 56 and still mobile but walking is harder. I treasure every step and tell others that. Lg has only made me stronger and confident. I love me and all our rare friends. I always felt special and a blood test confirmed it. Keep up the good writing, I enjoy. Respectfully Dorothy

  • Tali 22/07/2019   Reply →

    First of all, thank you both for your honesty. Being relatively new to this life with a physical disability, it’s so eye-opening and uplifting to learn about and from other journeys.

    Melanie, I could deeply identify with the teenager you, just trying to fit in. For me, this stage of seeking acceptance from others went well into my early thirties! (I know!) Of all things, what forced me to finally accept and love myself as I am, was my disability.

    And what you wrote about education, so true!
    I have 4‪ nephews and nieces. Just by being a constant presence in their lives and the lives of their friends, by talking openly about my disease and limitations – makes such a big difference!
    Instead of awkward and wary looks, I get offers of help, requests for a ride and countless questions.
    I was even promoted to “super aunt”

    #besthubbyever,
    Absolutely loved what you said about perceptions and acceptance of your limits!

    Tali

    • Dear Tali,
      Thank you very much for sharing your experience and your journey of self-acceptance! I truly believe that stories like ours help people who are struggling to reflect and maybe even gain some confidence. Again, thank you for your precious comment!

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