In the Down syndrome blogging community, something called a “blog hop” is happening this summer, hosted by Meriah, the author of the blog A Little Moxie. The point of said blog hop? To get bloggers, such as myself, to write posts specific to issues surrounding disability. To get us thinking, to get us reflecting, to get us capturing thoughts, feelings, and emotions surrounding disability in a tangible form. Here are my thoughts for the fourth writing prompt, which is:
Challenges Related To Disability
A couple of provisos to this post are necessary from the outset.
First off, I do not have a disability myself. I am writing this post from the perspective of a mother of someone with a disability. What follows, then, are my thoughts concerning the challenges related to disability from a caregiver’s perspective. My hope is that down the road, Jake will be able to speak to the challenges that he faces. In the meantime, this is my take.
Secondly, the phrase “challenges related to disability” can be taken many ways. I chose to write about it in broader terms. Yes, there are daily challenges as well. But echoing my sentiments in one of my previous posts for this blog hop, in terms of the day-to-day challenges, “you do what you gotta do”. With that in mind, my take on the topic “challenges related to disability” is as follows:
In my mind, the “mis” is the matter.
Confused? Let me explain…
The prefix “mis” indicates “wrongly, badly, or unsuitably”, suggesting that whatever follows it was done wrongly, badly, or unsuitably. To me, this is the crux of the challenges related to disability.
As I was thinking about challenges, words kept popping into my head. It started with misperception. Looking back and evaluating our life so far with Jake, I was pleased to realize that we have not had many negative experiences where people are downright rude, mean, or cruel. There have been many times, however, where the perception of Down syndrome or of those who have a diagnosis of Down syndrome has been wrong, has been bad, has been unsuitable. Stemming partially from historical and cultural perspectives on Down syndrome, partially from misguided stereotypes of individuals with Down syndrome (see, there’s the “mis” again, and I didn’t even do that one on purpose!), and partially from a lack of exposure to individuals with Down syndrome, perceptions of Jake often preexist getting to know Jake. The misperception is the biggest challenge, as it is not only a matter of introducing people to Jake, but it is also a matter of undoing the faulty perceptions that previously existed.
From the humble beginnings of misperception, the “mis” words started to take off in my mind.
Misjudged. Misbelief. Misguided. Misinterpretation. Misconception. Misrepresented. And the list goes on. What it all boils down to, however, is that the “mis” is the matter. It is for this reason that I feel advocacy is so important. It is for this reason that I am constantly on the lookout for opportunities to make Down syndrome a normal part of life for those we come into contact with. It is for this reason I welcome questions, dialogue, and conversation. It is for this reason I blog every day in the month of October, in an effort to raise awareness of Down syndrome, and ultimately change the misperceptions that I see all around me in daily life.
In speaking of the challenge of the “mis”, I do wish to clarify something very important. While I do believe that most people have a misperception of Down syndrome (I know I sure did before I had Jake), I do not wish to come across as though I am mad at everyone who does not see Jake exactly as I see him. I am in no way mad or angry at the world, at my friends, at the people in Jake’s life. In fact, the opposite is true. I am so grateful for the village that we have who are helping to raise our children. I put it out there as one of the biggest challenges for me because it is. Every day is a challenge, every day a new opportunity to teach, to correct, to advocate, to get rid of the “mis” and correct the perceptions. Sometimes I find incredible joy in the task set out for me. Other days, it is an incredibly hard challenge.
At the end of the day, however, I will fight until the day I die to lose the “mis”, so that we all learn to see Jake, and disability in the broader sense, in a better light.