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To Those Campaigning for Acceptance of People With Disabilities, Please Remember This

It may just be me, but it seems with all the heavy promoting by various organizations, parents and other people for the acceptance of children with special needs, that we, as a whole, are trying to sell everyone a better, more desirable version of the child and their disability.

I say this as news stories abound everywhere on social media, like Facebook, Instagram and Twitter, with pictures galore of children and adults with Down syndrome, autism or other disabilities. In these pictures the children are participating in athletics like cheerleading, basketball and wrestling for their school teams, graduating from high school with their diploma in hand, modeling for Target, Nordstrom or Toys ‘R Us catalogs, getting a job or even being a bat boy for the Cincinnati Reds.

There are videos of dancers, musicians or athletes with Down syndrome and autism blowing people’s ever-loving minds with their abilities. Marriages, driver’s licenses and college-bound adults with disabilities are also on the rise. How about the teenage kid with autism who’s a physics genius and working on his own theory of relativity?

These are all amazing achievements from awe-inspiring individuals, and we all go “ooooh,” and  “aaaah,” and smile. Maybe we even shed a few happy tears watching the videos, hearing the stories and seeing the pictures. Especially those of us who have a child with the same disability. We revel in it, all the while probably secretly, or even outwardly, hoping, yearning and praying for the same or higher accomplishments and recognitions for our child.

Now don’t get me wrong, I think it’s wonderful these people are all able to participate in something they love and excel at it. And I really do enjoy seeing their happy faces beaming with the pride of what they’ve achieved with a lot of hard work. There are so many individuals exceeding expectations, goals and misconceived mindsets, and it is a sight to behold. Of course they should celebrate and share their accomplishments, but I think we as a society desire the “higher functioning” child.

What about those so-called “lower functioning” individuals? What place do they have? Shouldn’t the child quietly sitting in a wheelchair deserve as much recognition and acceptance for their abilities, whatever they may be or as minor as they may seem?

What if a person with significant mental or physical delays isn’t involved in organized sports or can’t be trained to hold a job? What if they’re never potty-trained, always need help taking a shower and are unable to feed themselves with a spoon? Would it really be awful if they never moved out? Can society enjoy an individual who’s needs are higher and ambitions less headline-worthy?

I was especially conflicted in summer when I attended a Down syndrome convention. Everywhere you turned there were presentations and praise for teens and adults with Down syndrome who’d exceeded all expectations. These individuals with Down syndrome were more alike than different from those who don’t have Down syndrome. I felt torn because on one hand, I could see this kind of future for my one daughter, who has Down syndrome and falls under the “high functioning” label (I’ve actually been asked multiple times if she has just “a touch of Down syndrome”).

But on the other hand, my other daughter, who also has Down syndrome, wasn’t like these individuals at the convention. She’s perceived as “low functioning” by most who meet her because on top of having Down syndrome, she also has autism. This dual diagnosis makes her different from her peers who just have Down syndrome.

girls with down syndrome

Here I was at a convention all about Down syndrome, yet I felt like my one daughter was somewhat excluded because she couldn’t quite fit the convention’s overall emphasis on individuals with Down syndrome who most would label “high functioning.” It was disheartening.

In my opinion, there should not be such a strong focus on someone’s level of function, how verbal they are or what life skills they’ve mastered when trying to obtain acceptance, raise awareness, maintain dignity and gain the use of inclusive practices. Perhaps someone with a disability feels like they’re in the shadows, ignored or undervalued when compared to peers with the same diagnosis who are celebrated for their successes in their life.

My wish, no, my dream these days is for everyone to value, respect and praise individuals like my daughter, who have multiple diagnoses.

Or the child who will never walk.

Or the nonverbal teenager rapidly rocking in church and making loud vocalizations.

Or the 35-year-old man holding his mom’s hand at the mall.

I want these people to be valued and praised as much as the ones who can run, talk, dance in recitals, score a touchdown, shoot a winning 3-point-shot, earn their high school diploma or graduate from college by the time they’re 16. I’d also love to see a child with Treacher Collins syndrome or a cleft palate (repaired or not) grace the pages of a department store catalog.

If you’re promoting the acceptance of disabilities, then please embrace and include everyone — the lower functioning, the mid-functioning and of course the higher functioning. They all have a story and need to be celebrated because in the end all life is precious, no matter the functioning level.

This post originally appeared on Our Version of Normal.