My whole life I was raised never to judge a book by its cover, to always respect people until given a reason not to, and to remember that things are not always how they are perceived. I took these lessons to heart as I grew up watching my parents follow these same rules themselves, so why would I not? The most difficult of these rules was understanding that we do not always see what happens behind closed doors.
That was until I was 13 years old, when my mom gave birth to my youngest sister, Eden. We knew almost right away that Eden was different from how my other sister, Devyn, and I were. She was developing more slowly and was not hitting the typical milestones that most children would. So, when we went to the doctors and found out that she had Cerebral Palsy, it was a big wake up call. It was one of those things where I knew what CP was, but I never thought about what it would be like to have a sibling with special needs.
Eden did progress, even if it was slower than typical kids did, but as the years kept coming, so have all of her diagnoses. Eden has most recently been diagnosed with a genetic mutation, which in Eden’s case has caused A-typical Rett Syndrome. Rett Syndrome encompasses all of her previous diagnoses of Cerebral Palsy (CP), Autism Spectrum Disorder (ASD), Attention-deficit/hyperactivity disorder (ADHD), and Speech Apraxia.
With each diagnosis we have gotten for Eden, I learn more not only about her but also what real love and compassion are. That said, I have also seen firsthand how judgmental people can be, especially since they refuse to try and understand what is going on.
With each diagnosis we have gotten for Eden, I learn more not only about her but also what real love and compassion are. That said, I have also seen firsthand how judgmental people can be, especially since they refuse to try and understand what is going on. Parents at the park or playground get angry with her if she 'ignores' their kids' offers to play with them, or they give us strange looks when she makes her stimming noises or does things that most kids her age don't do. I sometimes think that I am happy that Eden is unaffected by the rude glances from judgmental moms at the park because she does not understand them.
Then I think about all the other people in the world with special needs who DO understand. All of those kids, teens, and adults who get strange looks just because they learn, do, and process things a little differently than neurotypical people. While I think about how angry, upset, sad, and embarrassed people must feel, and I cannot help but feel the same way. So, instead of moving along and accepting the fact that people are going to be judgemental, I spread awareness, even when not asked.
When Eden and I are at the park, and people give funny looks, I tell them she has special needs and is still learning how to play with kids. When they ask what her diagnoses are, I tell them. Sure, maybe it's not any of their business, but I tell them with hopes that perhaps they will do their research, or at least be more kind when they come across any other 'weird kid' at the playground.
This experience was one of the leading factors that made me realize how important awareness and education about the topic of special needs are. With these interactions, I noticed most times it is older people who seem to have an issue with Eden. I mention specifically older folks, as most of the younger moms I come across understand and are more willing to ask questions. I believe this is due to how different the generations are and the normalized beliefs for their time. For millennials and Gen Z, asking questions about autism might be more comfortable, as we are currently being brought up in a time of learning and developing equality.
Then I think about all the other people in the world with special needs who DO understand. All of those kids, teens, and adults who get strange looks just because they learn, do, and process things a little differently than neurotypical people.
More people are speaking up about issues that were previously ignored. Baby Boomers grew up in a time where lobotomies were glorified tortures techniques to make people, especially those on the special needs spectrum or those with mental illness. Lobotomies were so prevalent that even Rosemary Kennedy, former President John F. Kennedy’s older sister had the procedure done. My point is, although those on the special needs spectrum have become more normalized, there is still a lot of progress that we, as a society, have to make.
The conversation of special needs is difficult, and to say bluntly, awkward if you do not have personal experience with it. But just because something is a new concept does not mean you have to shy away from it. For example, if you grow up hearing about how dogs can bite people, how will you learn that most dogs are actually super sweet and simply want to be pet? You won’t, not unless you meet a friendly dog or ask someone with experience with dogs. It is the same thing if you have a question about special needs, ask someone who knows.
As of now, I encourage everyone to do their research, to look things up, and try to get a better understanding. I know it can be difficult, especially when the media is such a contributor to the stereotypes and stigmas put against those with special needs. We are taught that those with special needs look 'funny’, or very different from ‘normal’ kids.
When I tell people that Eden has CP, they are amazed at the fact that she is not in a wheelchair like how they envision all people with CP are. Here is an example of how the media interferes with people’s perceptions of not only people with CP but also people with any diagnosis that falls under the special needs spectrum. According to the CDC, “Over half (about 50%-60%) of children with CP can walk independently”. We are fed specific images of what people with special needs are ‘supposed’ to look like. Because of this, when a 'normal-looking' child/person does something out of the ordinary, society says that they are weird and to avoid them.
We are fed specific images of what people with special needs are ‘supposed’ to look like. Because of this, when a 'normal-looking' child/person does something out of the ordinary, society says that they are weird and to avoid them.
If you were to look up “someone with special needs” on Google right now, every picture would be of someone who physically looks different in some way. All of these people do have some form of special needs, but still, these are the only images that pop up, thus making it easy to forget about the divisions of the special needs spectrum that do not affect your physical appearance. Due to the forced mental image we have, it is harder for people with special needs who look ‘normal’ to talk about their struggles without being belittled.
People think that for there to be awareness for something, the people who struggle most from the issue need to be the ones to speak up, but when they do, their arguments get pushed aside. In the YouTube video "What Women With Autism Want You to Know," women are interviewed to debunk the misunderstandings of autism and to discuss the hurtful things people say. The women talk about how ignorant it is when they share their diagnosis, only to be told that “You don’t look like you have autism”.
The World Bank In says that 15% of the world’s population is somewhere on the special needs spectrum, whether it be physical, developmental, behavioral/emotional, or sensory impaired. With those numbers, you would think that the topic of all special needs would have been common practice by now. Unfortunately, that is not the case.
I do hope, though, that enough people will speak up, and just enough people will listen so that the stereotypes, rumors, and stigmas about special needs will be squashed one by one.
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