As World Down syndrome Day approached this year and I pondered what I might like to say I found myself wanting to answer this question; What is the one thing I wish I could change about Down syndrome? My answer simple and probably surprising. The one thing I wish I could change is the way others view it.
My first thought is that I often feel as though people’s minds automatically group people with Down syndrome. I wish that everyone understood that people with Down syndrome are not all the same. I’m sure this is something that I failed to realize before having KC so I’m thankful for the new lessons she is constantly teaching me and about life and inclusion and seeing the value in others but I wouldn’t be doing her any favors if I didn’t share my experience. I don’t want to be the person that if offended by everything, especially offenses that I likely committed before I understood what life with disability looked like. So my goal is to educate based on my own mom point of view. I want to be clear that KC is an individual just like you or I. While she may have things in common with other people with Down syndrome, she is just as likely to having things in common with you.
It happens often enough that I meet someone who discovers KCs
extra chromosome, either through my own conversation or by them meeting
her in person, and then the person I just met then goes on to tell me a
story about one time when they met someone else with Down syndrome and
their interaction and how “those
DS kids are all so “_______”.”I feel like a comparable example is if you meet someone with brown hair, you don’t immediately share a story of someone else you know who also has brown hair while saying things like, “one time I talked to a brown haired girl” or “oh she’s one of those kids with BH (brown hair)? Well you know how those brunettes can be…” Don’t misunderstand, I enjoy hearing about the successes and lives of other people with Down Syndrome and I LOVE making the connections and I DONT want this to come off as a complaint but rather as an opportunity to learn from my point of view. My wish is that realizing someone has an extra chromosome doesn’t immediately cause your mind to group that person with just any other story you can think of involving down syndrome. I appreciate the well meaning conversation but I think its of great value to note that this mind set takes away from your opportunity to learn about the individual right in front of you. I think you’re likely to discover that KC (or any other individual with Down syndrome) has so many likes and dislikes in common with more people than that one person in that story that may have just popped into your head.
The next though that brings me to my answer above is based off several recent interactions. The longer I’m KCs mom, the more obvious it becomes that one of her biggest challenges in life won’t be her intellectual level or social skills. It won’t be how well she does in school, or what achievements she’ll strive to earn as a result of her hard work to become an independent person. The one thing she’ll always be fighting to overcome is the way others view her before they even know her. She’ll have to prove that her life has value and meaning to people who might think otherwise just because of negative stereotypes and misconceptions people already have towards anyone with a disability. She’ll have to show educators that believe that all kids that come with an IEP are too much work that she is indeed smart and capable and worth every bit of effort poured into her . And YES it pains me to know that there are educators out there who will avoid being involved with her because they’ve already decided she won’t make their year easy.
It won’t be enough that at times she’s worked tirelessly to achieve things that come somewhat naturally to you or I. To others It won’t be enough that she has the determination and dedication to work hard at whatever she chooses to go after because there will still be those that have already written her off as more work or not worth the effort they assume it will take.
But the more I think about it the more I realize how simple it can be to change the very course in front her and anyone else with a disability.
Please, just don’t be that person. Don’t be the one that assumes you know what she’s like because you already know of someone with an extra chromosome. Don’t assume you know what she’s capable of or that it might be a little uncomfortable to be around someone that isn’t exactly like you in every way. Don’t be the teacher that rolls your eyes when you see an IEP without considering that you could be The One. You could be The teacher that teaches something in just the right way that it makes a lasting impact on my child, one of my most prized accomplishments. Don’t assume you’re doing her the favor by initiating a relationship with her. Expect to get something meaningful back out of the relationship. It’s very likely that you’ll at least walk away with a smile.
Parents, teach your children that our differences are the things that make us beautiful. Diversity is what makes the world go round.
And finally, don’t laugh at that joke your friend or co-worker just made about disability. Your awkward silence pretty much guarantees that they won’t make that same mistake twice.
We can all agree that life can be tough on its own. Please, I beg you, don’t allow yourself to be my daughters biggest challenge in life. Decide now to learn to view Down syndrome in a different way. She is So Totally Worth It.