These Things Matter

The week before school began I received an email from the principal of Coral’s new school, where she recently started transitional kindergarten (TK).  The email contained general information about school procedures for kindergarten and TK.  It also listed each grade’s teachers.  I noticed that Coral’s special education teacher was not included in the list under TK or kindergarten, only the general education teachers were listed.  I continued to review the rest of the slide show, perplexed and saddened by this exclusion.

I wondered: Why wasn’t Coral’s teacher included alongside the general education teachers?   Is Coral not really considered a TK student, but rather a child in a separate class who happens to be on the same campus as the actual TK students? How in the year 2021 is this still happening? 

The truth is that Coral is a TK student, like all the other TK students at the school. She needs additional services and a unique classroom placement to access her education.  Her teacher should have been on the list.  By not including Coral’s class, parents and students do not know that there is another class with TK students.  In a way, she is forgotten on the campus.  In a way, she is in fact viewed as “separate and different,” not a student like all the other students on the campus.   

It certainly was not the principal’s intention to exclude.  In my experience, 99% of interactions that result in exclusion are not created by malicious intent.  Rather, they are born from a lack of understanding, subconscious stereotypes of disabled people, personal discomfort around disability, an inability to empathize, and/or a lack of perspective/experience with disabled people.    

It may seem small to some—a forgotten name on a list of teachers.  But it is actually representative of much more—for Coral, for our family, for other kids at the school and for the community as a whole.

These things matter.

I did express my concern of exclusion to the principal, who kindly and thoughtfully apologized for her oversight and promised to be more inclusive in future communication.  I debated advocating for Coral’s right to inclusion in this circumstance. In the end, I am glad I did.  

These things matter.

In the days before the pandemic seemingly closed the world, we were at Legoland.  Coral was seated on her favorite ride (the swinging pirate ship) with Tom and Tate, patiently waiting for the ride to start.  She started to fuss a little, as the waiting continued.  The ride attendant approached Coral and Tom and asked, “Is she okay?” Tom explained that she was fine, just waiting for the ride to start.

She was not being unruly or acting dangerously. Lightly fussing was her way of expressing impatience with the wait, given that she didn’t have words to express impatience.

The ride attendant then told him, “I need HER to tell me that she is okay.”

Taken aback, Tom replied, “She’s nonverbal. She can’t tell you that. But I’m telling you that she is fine. She loves this ride.”

The attendant did not back down, “Unless SHE can tell me that she’s okay, she will have to exit the ride.”

Shocked, Tom told her once again, “She can’t talk. She can’t tell you that. She has autism. But she’s fine.”

In the end, Coral was forced to exit the ride prior to it beginning. 

Needless to say, we were very upset about Coral being denied access to her favorite ride because she couldn’t speak. 

The ride attendant was young.  She clearly lacked training in how to recognize and assist neurodiverse riders, a training she should have received by the company—one that should be rooted in a policy of respect and empathy for all patrons.

These things matter.

This summer I brought Coral into a small birthday party to pick up Tate.  She was in a stroller, happily being Coral– shaking her head back and forth, humming, staring off at different light sources.  I greeted the parents and kids and called for Tate to get ready to leave.  While waiting, no one (not one child or adult) greeted Coral, despite us standing right in the middle of the party and regardless of our greetings.

Everyone acted as if she wasn’t even there.  It was so strange.  And so sad. 

Over these past five years it has become very clear that some people (more than others) are uncomfortable around disability.  Others think that since Coral appears to be paying no attention to them, it doesn’t matter if they greet her. 

It does matter. A lot. 

At times I wonder if Coral is aware of the exclusion she is experiencing.  While there are circumstances where I believe she doesn’t really know what has happened, I do know that she can sense the difference between an environment that is full of love, acceptance and inclusion versus one that is comprised of fear, rejection and exclusion. 

These things matter.

There have been countless conversations with friends, therapists, community members and others where the worth, value and life of Coral and others with disabilities has been called into question by casual comments.  Sometimes it’s not a comment but a look or a stare, where pity grips their face (maybe for even a moment), but long enough for it to register.  

All these things matter.

In sharing, my intention is not to make people feel badly.  Even as a mother of a disabled child, I check myself daily—my thoughts, my beliefs, my expectations and my stereotypes.  I don’t always know what to say or how to act when I meet other disabled children or adults.  For me, it may be a little easier in those moments because I now follow one simple rule.  I am mindful of my thoughts and feelings in order to be mindful of my words and actions.  I try to be present the way I would want others to be with Coral.  

Respectfully.  Empathetically.  Equally.   

We all (myself included) play a role in the forward progress (or not) of equal and equitable rights for disabled people, including the inclusion of all people, no matter their abilities.

Of course, the larger events (new laws, educational reforms, etc) play a critical role in all of this. However, I believe the foundation for change is created in the daily interactions between people. 

Smiles. Greetings. Mindful interactions.

As a society, we can do better. We need to do better.

Because these things matter.

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