Don’t Believe the Hype: 5 Misconceptions About Living with a Disability

img_5719The 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:

 

  1. 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.
  2. 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 the 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.
  3. 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.
  4. 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.
  5. 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.

Published by girlschronicallyrock

I was born and raised in Cambridge, Massachusetts. My personality is friendly, strong work ethic, and great professional skills that makes her the hustler she is today. I graduated from Framingham State University with Bachelor’s in Fashion Design and Merchandising, a year after I graduated from Cambridge College with a Master’s degree in Business Management. While earning my degree I gained invaluable experience in the business/financial and Fashion Industry with working at different departments at Cambridge Savings Bank and many merchandising companies such as Motherhood Maternity, Tommy John, Spanx, Echo Design and Fossil Group. While in Framingham State University, I was in the Fashion Club and Black Student Union Club where I was able to meet new people and gain and learn a new experience in both groups with a different diverse of people. I knew I always had a passion for fashion from in middle school and new I wanted to be a Fashion Designer. I looked up to Fashion Designers like Kimora Lee Simmons and Betsey Johnson. I love their unique different styles and just two successful entrepreneurs who are making it in the fashion world and continuing to grow. My dream is to possibly meet both of them one day, even maybe do some business together. At the present time, I am working as a Merchandise Coordinator for Tommy John inside of Macy’s and Nordstrom within the Boston Area. I also owned my own t-shirt line business called Girls Chronically Rock which was inspired by myself because I was diagnosed with Muscular Dystrophy back in graduate school so I wanted to make something inspirational, motivating for people who may have a chronic illness like myself or may be battling anything in their life, to let them know that they rock no matter what. With the wonderful work experiences over the years, I am really just an easy-going person where sometimes I love to be at home watching lifetime movies or many of my tv shows that I love to watch on a daily basis. I like spending time with family and friends whether its traveling, going out to eat and going to special events. Through my education and work experience, I have gained the knowledge and skills necessary to excel as a Fashion Designer and Visual Merchandiser. I am both qualified and eager to strive at my business Girls Chronically Rock and continue with dedication, and I know my hard work will pay off and I will reach my goals. I will soon hope to have my t-shirt line sold in department stores such as: local boutique stores, Macy’s, Karmaloop Foot Locker and many more. Here is a little more in depth detail about how I was diagnosed with Limb-Girdle Muscular Dystrophy: I have Limb-Girdle Muscular Dystrophy (MD); I was diagnosed at the age 24. I was born and raised in Cambridge, MA and went to high school in Cambridge. I received my bachelor’s degree in Fashion Design and Merchandising and then furthered my education in getting my Master’s degree in Business. When I first discovered my symptoms of my MD, it was crazy to me because I started to get symptoms around 2009. While in graduate school I began to repeatedly fall, and my leg would just give out on me without notice. I would fall to the ground and not be able to pick myself back up, I would need assistance from someone to lift me up with all their might, because it was something I just wasn’t capable of doing on my own. I also began notice when I tried to reach for certain things in the kitchen cabinets or try to exercise I was unable to lift my right arm up all the way. I kind of just thought to myself maybe I need to go on a diet and lose weight, but in the back of my mind I knew it something more. So I went to see an orthopedic, but I was told that this was more of a neuro-muscular issue, so I then went to see a Neurologist. Once I saw the Neurologist, she then tested me and gave me muscle biopsy, MRI, an EMG and every other test you can think of. So after multiple tests, I was finally diagnosed with Limb-Girdle Muscular Dystrophy. Limb-Girdle is a form of MD that affects the limb of the shoulders all the way down to the legs, which progressively over time eventually gets worse. The first thing I thought was how long am I going to live will I be in a wheelchair soon, and what is my life going to be like from now on. I knew I had to be strong and continue to do what I have to do so I started doing some research on it and read what eating healthy and exercising would help. I joined weight watchers with my cousin and I lost over 36 pounds and I felt great. I’ve able to keep half the weight still off, and I am still determined to lose more. They have multiple types of Limb-Girdle Muscular Dystrophy, and 5 years later my doctor’s are still trying to figure which type I have exactly. The only thing they know at this point is from the types I may have can affect my heart which is why I often have to go get a echo-cardiogram test that tests my heart to make sure everything is ok. Living with Limb-Girdle Muscular dystrophy is still new to me every day. I wake up every day not knowing how my legs are going to feel or what pain I may have when leaving my house. I try to be very careful when walking because I don’t want to fall, because I won’t be able to pick myself back up. Although I am on my feet a lot for work, after a certain amount of hours, my legs start to weaken. I am currently a visual merchandiser at different locations a very popular clothing store. I enjoy my job because it keeps me and my legs active and I enjoy traveling to the different store locations and doing what I love and my part in the fashion industry. I have the wonderful support from my family and friends but at the ending of the day, they have NO IDEA what I go through on daily basis or what I’m feeling. I try to explain to them how my legs feel, but it’s just so hard to explain. I still go out and enjoy my life as normal, but sometimes I always have certain things in the back of my mind. When going out I find myself researching about where I am going first, like does this place have stairs?, does it have an elevator?, do they accommodate handicap people? So all of these things I worry about when I go out and my friends and family have no idea. Living with MD has made me realize how strong I am and knowing I have no choice but to deal with this. I sometimes get stares because people wonder what a young girl like me is doing either walking with a limp, with a cane, or parking in a handicap parking spot. But I don’t mind because they just don’t know me or know what I have. Although my MD has progressed over the years and getting worse, I have learned to except it and make certain changes in to my life such as now walking with a cane in order to keep my balance and helping me not to fall. At this point I am just taking everything day by day and staying strong. But there is one thing I want people to know by reading this quote. "There’s no “cure” or a pill will “fix it”, but at one point I thought it may help. And I thought the same with therapy and food. But it’s my endless support from family and friend that helps. It is hardest thing that I have ever done, and I found myself much stronger for doing it. Never, ever underestimate the power of your desire. If you want to live badly enough, you can live. The greater question, at least for me was: How do I decide I want to live? That is the question I’m still working on?" AS SEEN IN...

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: