Thursday, March 21, 2019

A day to celebrate people who actually aren't so special

Today is Down Syndrome Awareness Day. March is Cerebral Palsy Awareness Month. April 2 is World Autism Awareness Day. There's a whole lot of disability appreciation happening out there. Today is also the last day of the Special Olympics World Games, which is taking place in Abu Dhabi. Photographer Brandon Stanton of Humans of New York's (HONY) is there, and last night I was browsing his Insta feed. I looked at the beautiful faces he'd captured and the quotes from the athletes and the staffers he got, and one thing stood out.

We need awareness days and dedicated events for people with disabilities to build their confidence, give them the means to succeed, raise them up and call attention to their greatness, because the world does not respect, value and include them enough. But people with intellectual and physical disabilities are not so different from the rest of us, as I well know from raising Max—and as I was reminded in these snippets from HONY.

People with disabilities are self-motivated.   

"I have twenty superheroes that I keep in a folder on my phone and I take it out to look at them, and I pretend that I am the leader of an entire superhero team. The whole team is counting on me to get as strong as possible because I am the muscle of the team."

They can push past their fears. 

"For me I would describe myself as Aspergers, meaning not understanding what's happening around you and all that stuff.... Tonight I'm doing a poem for the opening ceremony about being the same as everyone else. It's going to be live on the TV. I'm excited but also a little nervous to be honest. I'm going to pretend like the stadium is empty except for all my friends that I love. My parents are very proud of me. They said, 'Look at Nazeer. Our shy boy is no longer shy.'"

They have major team spirit. 

"I have to be happy and positive because I am the basketball team captain. Whenever we make a shot, I clap. I also clap if we miss it. And I clap if the other team makes it. If somebody is sad, I tell them don't be upset, my sweetheart.... Yesterday we won. But it doesn't matter if we lose because at the end we always dance."

They are aware of their challenges, and don't make excuses for them.

"Sometimes my brain processes things difficult. I just need more time. And in school everything needs to be fast. You always have to know what's going to happen next and it can be hard to make friends."

They have ambition.

"My name is Ariel and I'm from Costa Rica and my dream is to be a journalist. I have an Instagram page where I am going to put all my interviews. This week I would like to cover the feelings of the athletes and parents and coaches. I ask questions like 'Are you having fun?' and 'What is your favorite sport?' and 'Are you enjoying Abu Dhabi?' My mom is helping me think of the questions to ask.... She reminds me to talk slowly. And to say 'Yes, sir' and 'no, sir." And to love people. And not to say bad words."

Even as we celebrate people with Down syndrome and cerebral palsy and autism and cheer them on at the Special Olympics and try to rack up respect, let's keep bringing it back to their humanity. People with disabilities are not "special" for having disabilities, because that would make them a whole other class of human beings. They are people, period, who ought to be recognized that way. My son's disabilities are one part of who he is—and not a negative part or a defining part. Ask me to describe him and I'd say he is a boy with a gigantic personality, exceptional charm and the biggest heart. (Not to mention, good hair). And yeah, I write a blog about raising him and other children with disabilities in large part because as a parent, I struggle to get people to see Max and not his cerebral palsy and I ache to open people's eyes.

Is he "special"? Well, of course my son is special to me, his mom, same as each one of my children is special to me.

And of course people with disabilities can have "special" needs and challenges, as do people of all varieties.

And of course people with disabilities need "special" accommodations, to level the playing field and enable inclusion in a world that often shuts them out.

And of course there are "special" and exceptional disabled people—same as in the general population.

There's beauty icon Madeline Stuart

And comedian Zach Anner, who has cerebral palsy

And actress Lauren Potter, who has DS 

And the brilliant physicist Stephen Hawking, who has ALS

And singer Andrea Bocelli, who is blind

Maybe someday, there won't be a need for awareness days for disabilities because people with disabilities will be truly integrated into society. Maybe they will be just ordinary people (ordinary!) who are part of the glorious gamut of human beings, ones who have strengths and aspirations and imperfections and passions and all the emotions, like any one of us. Maybe people will give them the respect and equality they deserve every single day. Maybe they will no longer be "special" because in the end, they are as unique as you and me.


  1. Love That Max Community….
    Does anybody know why Down syndrome awareness/acceptance has two colors--yellow and blue--instead of one? I am just curious.... ;)
    March is also congenital diaphragmatic hernia awareness/acceptance month--a Life-threatening birth defect that I was born with--did you know that?! Oh yeah.... March 31st is also C.D.H. awareness/acceptance month!! So much disability/special needs appreciation going on!! ;-D
    Peace out, Mary Lou

    1. Mary Lou:

      Probably a good resource would be the National Down Syndrome Congress or the National Down Syndrome Society - a page where they explain the ribbon and the colours.

      Thank you for keeping 31 March in our futures.

      And I know the Buddy Walk also uses the blue and the yellow. Sometimes I've seen the more saturated blues; other occasions the less saturated ones.

      Good design decision/good contrast ...

      I would also ask the European and International orgs ...

    2. Adelaide....
      I actually Google-searched why Down syndrome has two colors, but I came up empty-handed!! Thank-you, Friend!! :)
      Yes, yes.... March is congenital diaphragmatic hernia awareness/acceptance month, and 3-31 is C.D.H. awareness/acceptance day!! Wear turquoise!! ;)
      September is also craniosynostosis--one of my other birth defects--awareness/acceptance month!! Also, in an effort to not leave out the Beautifully Unique 'Auggie Pullmans', {you know, from Wonder? That was way too cliché}, in this world, September is also craniofacial awareness/acceptance month!! :-D
      Peace out, Mary Lou

  2. I meant to write.... March 31st is also C.D.H. awareness/acceptance DAY. Whoops!! ;-}


Thanks for sharing!

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