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5 Misconceptions About Living With a Disability

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The alarm clock goes off. My eyes are open, and I narrow my lids to a squint as the sun skids across my bed. It’s time to get up. It’s time to start my morning routine of figuring out how my body will function today. If I sit up, will I be able to move the rest of my body without any pain? How should I pace myself as I prepare to move my feet from the bed to the floor to avoid falling? How will I turn on the bathroom light? These are all questions I encounter as I start my day living with a chronic illness.

When I tell my story, I am making my best effort to invite others into the world of muscular dystrophy in hopes of helping them understand the life I and so many others live is not as simple, easy to explain or mundane as some portrayals of disabilities in the media may have you believe.We feel like you feel. We make mistakes. We have our good days and some really bad days, but most of all, we are human just like you.

Living with a disability has many challenges, but in my experience one of the hardest to overcome has been the misconceptions of our families, friends and the world regarding what we can or cannot do. I want to share a few myths that limit the ability of your loved ones, friends or co-workers to be seen as anything beyond “disabled.” Here are five misconceptions about people with disabilities:

1. That we are lazy or unmotivated. 

I once had a family member infer that I was lazy because I used Alexa to turn the lights in the room on or off instead of having to get up again once I made it into my bed. I was taken back by the insensitivity of the statement, but knew it came from a place of misinformation. Technology gives us the ability to decrease the amount of energy, bodily pain and possible injury that can be involved in something as simple as turning off a light. Before making a judgment, take the time to listen and understand why someone may choose what may seem like comfort. Sometimes for people like me with disabilities, “convenience” can be the difference between a day full of falls or rest.

2. That we don’t date or enjoy a social life. 

The desire for intimacy is a human trait. Just about everyone wants to feel wanted, go after their crush and make meaningful connections. Dating with a disability can be a challenge as you distinguish the wheelchair fetishists from genuine interest, but it does happen and yes, we hope, prepare for and seek romantic relationships. In the voice of my favorite female performer, ‘Yonce, “We like to partayyy!” Having a disability doesn’t mean you stay in all the time or don’t enjoy being around people.

For me, having a functional social life just means I need to check the venue before I go to make sure the space is disability-friendly and has the right setup for me to feel comfortable. Does that mean there will occasionally be times when I am too tired to go out, or not convinced the venue will be conducive to my scooter? Yes, but who doesn’t get tired or change their mind because the environment doesn’t have the right vibe? Do me a favor: Make sure to invite your friends or family with disabilities out every once in a while. Don’t decline for them by never asking. Include us in your plans and let us make our own decisions.

3. That people with disabilities do not make quality employees. 

Disability should never be a reason to treat someone differently, including pre-judging their quality of work. I’ve found over the years that some employers don’t know how to handle having an employee with a disability. Instead supporting them in achieving the same quality and amount of work as another employee, some employers would rather not deal with it.

My advice if you are an employee or an employer is this: have a real, honest conversation. Not being offered an opportunity to be accommodated by the employer is one of the red flags that you may not be in the right place or that an organization may not be as disability-friendly as advertised. If we can order standing desks for employees based on preference, allowing an employee to avoid tasks that involve heavy lifting or moving to a first-floor office shouldn’t be that difficult. Start the conversation.

4. That people with disabilities don’t like being asked questions.

This can be tricky because truthfully, some people are not comfortable discussing their condition freely — especially with strangers. But I want to challenge you to start building familiarity with the people around you who may have a disability and get to a point where you can ask that question, “what type of condition do you have?” Again, I can’t promise that everyone will be ready to speak, but a lot of us would rather you ask than assume.

I consider telling my story a gift now, so if someone starts asking me questions, they are in for a whole journey! Don’t let assumptions or fear take over. Ask questions, show people you care and start to educate yourself by hearing first-hand what someone is dealing with and going through on a daily basis. You’ll be glad you did.

5. That we don’t require the same amount of care or attention as our counterparts. 

Some doctors don’t know how to handle the conditions folks with chronic illnesses have, or don’t take the time to properly diagnose us. I have heard horror stories of medical professionals who have a very negative way of dealing with their patients, or who work without a sense of empathy or compassion. I have encountered some medical professionals who make you feel at home in their office and others who make you feel like a number.

Whether it’s a doctor or a neighbor, people living with disabilities deserve respect, care and the same quality of services and treatments as our non-disabled counterparts. I know it can be difficult to practice empathy for something you’ve never experienced and don’t fully understand, but you do know what it’s like to have a bad day, be in pain or be misunderstood. Focus on those feelings and draw your empathy and compassion from that space. Think about how you want to be treated and treat everyone with that same level of respect.

I hope you feel more enlightened and empowered to interact and begin to understand what it’s like to live with a disability or chronic illness. People like you who take the time to learn and understand others make the world go round. Do me a favor, share this with a relative, co-worker, significant other or friend and let’s undo each of these and the many other misconceptions about living with disabilities, one-by-one.

Originally published: April 17, 2019
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