The Miserable Experience That’s Not

This entry was originally posted on August 16, 2013.

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People with disabilities are often seen as pitiful, helpless, deformed, “broken” or the biggest societal stereotype, asexual. No wonder people assume we are angry, bitter and depressed! Sounds like a miserable existence, doesn’t it? If all that were true, that is.

The real problem is that we, people with disabilities, came to believe this, turning these stereotypes into our own collective reality. We may not be viewed as intelligent, capable, masculine/feminine or as a sexual being. We may have the assumptions put on us that we are not interested in or able to date, drive a car, start a family or have a career. Guess what? We do not have to wear the labels handed to us.

Just like anyone, disabled or not, we teach others how to treat us. And like most people, we have stereotypes to tear down and barriers to remove. Preconceptions follow every race, body size and income bracket, and we all must cope with judgements and attitudes on a daily basis. Everyone has dealt with these societal and personal barriers and we all have a responsibility to try and challenge some of these assumptions. Teaching is not just up to those with disabilities, it is everyone’s duty to be kind, compassionate and helpful to each other. Though your challenges may go ignored by some, and this may make you sad, angry and even indignant, you must not let those experiences stop you from living the life you want. Don’t let anyone put up barriers for you.

The biggest barrier of all, of course, is your attitude. I’m talking about the attitudes of everyone, able-bodied or not. I was born with Larsen Syndrome, a rare genetic condition where the body lacks cartilage, which affects all the major joints, spine and trachea, and necessitates the use of an power wheelchair and respirator. At 12 years old, I became further disabled when scoliosis advanced to paralysis from the armpits down. At a difficult age, this drastic body change shook my foundation to the core. All of the negative perceptions of disability took hold in my mind; “I’m no longer worth being around anyone”, “I have nothing to offer”, “I’m not pretty and no one will want me”. It took me ten years to crawl out of that dark place, to start using the supports around me and to start talking openly about it. My negative attitude delayed me big time from getting to where I am today.

Now, I am at a place in my life that was completely inconceivable to me back then. I never imagined that I would hold the qualities of a strong and free woman — living independently, making my own choices, standing by my decisions and speaking out for what I believe in. Until I started doing things that made me happy, living out my dreams and following my heart, I felt trapped within labels, stereotypes and expectations. Today, I am 31 years old, am the founder and counsellor of my own practice and have an amazing full-time position where I help individuals with physical disabilities learn to live independently in the community. Having spent a good chunk of my years obtaining a counselling certificate, and education for a writing career to fall back on, I had no choice but to believe it would pay off by leading to a career that I am passionate about while obtaining a financial position to one day purchase a house. As unimaginable as these dreams once were, they are happening. With self assurance, willingness and motivation to bring about positive change in my life, I would not know personal happiness and fulfillment.

The transition to positive acceptance does not need to take that long. Though I feel I’ve reached a great place in my life, in reality the transition to positive acceptance never really ends. There are always lessons to learn and room to grow. Even after 30 years of having a disability, I still make new discoveries and gain perspective.

Case in point: a fellow Facebooker recently added to my perspective on disability by sharing her helpful tactic, which I believe applicable to most life situations. The approach she shared with me is to separate the actual “living with a disability” from the “attitudes people have towards disability.” By compartmentalizing it this way, one can deal with each of them strategically.

I deal with pain, low energy and an increase in loss in capacity. Those things will always be a part of me; I have to acknowledge that and integrate it into my reality. It is ok to admit that you got a shitty deal. But after that, face your current reality, ask for help when you need it, but politely decline assistance when you are capable of achieving whatever it is that you want to do. Be open to the fact that you can do the things that other people do, like have that dream career, a loving partner, a family and whatever fulfills you desire; just know that you may have to achieve those things in non-traditional and creative ways.

The second aspect is the attitudes towards disability. Being a person with a disability gives opportunity to witness the insensitivity and ignorance of people, but also their compassion and understanding. What counts is your response. No matter what particular situation, whether it be disability, or some other societal or personal barrier, a positive attitude encourages curiosity, understanding, compassion and, eventually, acceptance. Teaching is done by example, by helping others that are going through similar situations, advocating and sharing your personal experiences and adding to the perspectives of others.

Like it or not, people with disabilities are involuntarily designated to a position of educating others by example about equal opportunity in the world of work, school, family and relationships. How will stereotypes ever be deconstructed if we don’t create and reconstruct new realities for ourselves? So those of you with disabilities, it’s time to use your mind to share your intelligence, express yourself, dress hot, discover sexuality within you, and take no shame, guilt or embarrassment while strolling in your wheelchair (or whatever mobility aid you need to get around). When you make that change to positive acceptance, the rest of the world does too.

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The Miserable Experience That’s Not

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