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 that 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 that the life I and so many others live is not as simple, easy to explain or mundane as some portrayals of rare diseases on tv, in print and other forms of 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 one of the hardest ones to overcome has been the misconceptions that our families, friends and the world around us continues to make; especially regarding what we can or cannot do.
Based on my many interactions with both individuals living with a chronic illness and those who don’t, I want to share a few perspectives that limit the ability of your loved ones, friends or co-workers to be anything beyond “disabled.”
5 Misconceptions about people with disabilities:
- 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 that it came from a place of misinformation. The great thing about technology is the ability to decrease the amount of energy, possible injury and sometimes bodily pain 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 want may seem like comfort. Sometimes for people like me with disabilities, convenience can be the difference between a day full of falls or rest.
- People with disabilities don’t date: or enjoy a social life Intimacy is a human trait. Everyone wants to feel wanted, go after their crush and make meaningful connections. Dating with a disability can be a challenge as you navigate the wheelchair fetishes from genuine interests, but it does happen and yes, we too 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 that you stay in all the time or don’t enjoy being around people. For me, having a functional social life just means that I need to check the venue before I go to make sure space is handicap-friendly and has the right set-up for me to feel comfortable. Does that mean that 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.
- That you’re not a quality//potential employee: Disability should never be a reason to treat someone differently, including their quality of work. I’ve found that over the years, some employers don’t know how to handle having an employee with a disability. Instead of working with through what alternative methods for achieving the same quality and amount of work as another employee, some employers 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.
- People with disabilities don’t like answering being asked questions: I know this can be a tricky thing to do because truthfully, some men and women are not yet in the space to discuss their condition freely - especially with strangers, but I want to challenge you to start building a familiarity with the people around you who may have a disability and get to a point where you can ask that impending question of, “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.
- That we don’t require the same amount of care or attention as our counterparts: Some doctors are not as thorough or don’t know how to handle the conditions folks with chronic illnesses have. 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 disability-free 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 to be misunderstood. Focus on those feelings and let that be the place you draw your empathy and compassion from. 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. It’s people like you, who take the time to learn and understand others that 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 misconceptions about living with disabilities one-by-one.