I have been in a wheelchair and on a ventilator since I was 13-years-old, and I most likely will be for the rest of my life, due to a rare and unknown muscle myopathy. In the five years that I have been physically disabled, I've been hoping that I would one day wake up and be able to face the world knowing that I wouldn't have to see people staring at me, pointing at me, whispering about me, and paying me other forms of unwanted attention—simply because my physical appearance is different. Unfortunately, in five years that day has yet to come, and unfortunately for so many more—that day never came.
It is 2016. People with disabilities (physical, cognitive, or anything in between) shouldn't be viewed as if they are aliens. I've always been told, "everyone has something." Whether you're aware of it or not, everyone around you has something—be it a physical disability, invisible physical disability, cognitive disability, or psychological disorder, or just going through a rough patch in life. Maybe the person standing behind you in Starbucks suffers from anxiety, however, you wouldn't view them as their anxiety because you can't see it. Even if you did find out that person behind you suffers from anxiety, you wouldn't see them as their anxiety because it still isn't necessarily visibly evident. If I was behind you in line though, you'd view me as my physical appearance, and treat me as my physical appearance, simply because I use a motorized wheelchair to get around, and I have tubes coming from my neck to help my weakened heart and lungs do their jobs properly. I'm aware that it's unusual to see someone like myself, but that doesn't give you an excuse to treat me, or anyone else like me, differently.
Why am I viewed differently than any other person in the room, able-bodied or not? Everyone looks different (with the exception of identical twins), yet we don't point, stare and whisper about every single person we see in our day-to-day lives. This might be shocking, but, believe it or not—I am a person, just like everyone else! The same goes for anyone else with disabilities. We are people! We have thoughts, we have emotions, we have feelings, and we are fully aware of when we are a target of unnecessary and unwanted attention. Maybe I'm being selfish, but it is time that we normalize disability, so I, and so many others, don't have to face being treated as if we are inferior and feel like an object on display whenever we go out into the world, just trying to enjoy life like everyone else.
By paying me unwanted attention, you're also paying the people around and with me unwanted attention. I can be out with my friends and family having a nice time, and that time can be ruined in a split second because one or more of the people I'm with notices strangers pointing and staring at me when my back is turned, and I can't see their reaction to me. If you're going to react to me, at least, react to my face, because it's much less insulting than doing it behind my back. If you're focusing on me when I'm not aware, but my loved ones are, you're hurting them by blatantly disrespecting me, someone they view as completely normal, because you're objectifying me right in front of their eyes. If you're not going to have the human decency to respect me, then please at least have the decency to respect my able-bodied companions.
In order to normalize disability, we have to start from the top and work our way to the bottom. Everyone over the age of 18, please pay close attention: You are setting up the world for future generations, and you are in the position of consciously learning and educating.
It is one thing when a child pays me unwanted attention, and will loudly ask, "mommy, why is that girl moving around in a chair?" and "what is coming out of her neck?" Children don't know better, and they haven't been educated enough to understand my physical differences, amongst many other people's unique physical differences. Therein lies the problem, though! They haven't been educated about people who look different. Parents: it is never too soon to teach your children that there are people in the world who look different, whether it be having different colored skin or being in a wheelchair. When your child asks you, "why does that girl look like that?" it is a teaching moment for you! Instead of telling your child to stop staring and to stop talking, come up to me with them and ask me about me. I would love to help educate your child and teach them to embrace differences. I won't be offended if you ask me questions, but I will be offended if you inadvertently teach your child that it is okay to view people with physical differences as "freaks" or "not normal," which is what you are doing by silencing your child. By silencing your child, you are silencing me and you're not giving either one of us a fair chance at betterment.
For those adults who are not parents: you still shouldn't stare, point or whisper about people who have an interesting physical appearance. You are a grown person and you should be open to teaching yourself because it's never too late to stop learning. The unwanted attention you pay me and others like myself just appropriates that behavior, showing other men, women, children and anyone else that it is okay to not treat us with any human decency. If we start teaching the people around us and leading by example, that there are people in the world who are very different, whether there are visible differences or not, then maybe there is the chance that disability will be normalized.
Another step we need to take in normalizing disability is getting rid of assumptions! Certain parts of my body don't work the way evolution intended them to, but my brain is up and running and fully functioning. I'm not really sure why, but there seems to be some sort of association between physical disability and cognitive disability. However, one is not indicative of the other. One of the reasons I love meeting new people, is because they profile me based off of my physical appearance, and when they greet me, they greet me in a very infantilizing way. The look on people's faces when I open my mouth is truly the best. They seem shocked that I can say more than 10 words, and that I can form coherent sentences—sometimes even involving complex words! It must be some sort of miracle that once I sat in a wheelchair for the first time, and took my first breath with the help of my ventilator, that my cognitive abilities weren't sucked right out of my body. Yes, it is true—despite being physically disabled, I'm able to maintain a GPA that is between a 3.0 and 4.0 (and not to brag, but my current college GPA is higher than my able-bodied older brother's!). Physical disability is not necessarily indicative of cognitive disability, and cognitive disability is not necessarily indicative of physical disability. But, even if that was the case, why should you treat a person with disabilities as such? There aren't disabled people. There are people with disabilities. In other words, everyone is a person and some of those people might happen to have disabilities. They aren't their disability or disabilities, though. They are always, first and foremost, the person they are and define themselves as.
Let's backtrack a little bit. Remember how I mentioned people usually greet me in an infantilizing manner? Well, as much as I'd love to go back to my infant days, I'm not a baby! Another stereotypical view of people with physical disabilities is that we are helpless and clueless like infants. I can do a lot for myself, but my reality is that I do need assistance with many things. Needing help doesn't mean you're helpless, it just means you need some assistance in obtaining your goal. I don't need to be carried around everywhere, though, I don't need to be told when it's time to eat and what I'll be eating, I can speak in full sentences and maturely express my emotions, and I can do many other things that infants can't. So why do people with disabilities get treated as if they are infants? If I'm not acting like a baby, then don't treat me like a baby. It cannot and should not be assumed that physical appearance is indicative of personality and non-ambulatory capabilities.
There are so many things we as a society can do to normalize disability. How can we start? By educating and getting rid of assumptions. In order to educate, we need to ask questions. Don't be afraid to ask questions. Questions aren't offensive, but ignorance is. Ask people with disabilities their preferred way of being treated, because not everyone with disabilities marches to the same beat. Also don't maintain stereotypical views and assumptions of people with disabilities, because you'd be surprised at just how strangely "normal" many of us are. Greet us the same way you'd greet any other person, and treat us with the same kindness and respect you would want to be treated with.
For people with disabilities: don't be afraid to speak up and advocate for yourself. It's okay to say how you feel and how you want to be treated. I know it can be scary sometimes, because even I go silent much of the time due to fear, or feeling like an imposition. If we, the people who are looking for change, want change, then we can't expect that unless we have our voices heard. It has taken me a long time to come to terms with being disabled, and there are still days where I struggle with identifying with the disabled population. Maybe if disability was normalized, though, I wouldn't have that problem, and neither would so many others. Change is possible and change needs to happen. A person is a person, no matter what they look like, inside and out.
Hopefully, one day I'll wake up and go out into the world, and not have a single person point, stare or whisper about me. Hopefully, it doesn't take another five years to feel "normal" again. Hopefully, family and friends no longer have to have their enjoyment violated by immaturity and ignorance. Hopefully, so many people in the disabled population will be able to face the world without fear and hesitation, and be able to carry on without a care in the world.
I would never wish any sort of disability on anyone. Never in my life did I imagine things being the way they are today. But honestly, I really wouldn't change anything in my life, except for the way I am portrayed by society. If it were to ever happen to you, or someone you love, you wouldn't want either one of you to be treated differently, all because of circumstances you have no control over. If you ever catch yourself distracted by a person's unique physical appearance, imagine yourself in their position and how they feel having your eyes burning a hole through them when all they are doing is going about their daily life like everyone else. Enough is enough.
It's time to stop viewing what's on the outside, and consider what's on the inside.