The Pursuit of Normal

The Pursuit of Normal

By Leah Stein

“I heard about you guys,” the woman announced distastefully. “You say you train and employ people with disabilities. But I’m looking at the baristas and I don’t see one person with a disability! Everyone looks normal”.

I turned around to see what was going on. It was a frigid day, and I was in Friendship Cafe, chatting with one of the trainees, when I overheard this conversation up at the front of the cafe. This woman observed the cafe’s atmosphere with her nose wrinkled in dismay.

Before I had a chance to jump in and answer, the barista responded  “You don’t see anyone here with a disability? Excuse me but I have autism. I struggle my whole life dealing with people. I tried getting a job in so many places. I’m 30-years-old and finally found a place that accepts me and makes me feel needed.

The barista’s words were so powerful. This woman is not the only person with these misconceptions. We all have expectations and misconceptions about people and we’re quick to judge what we “see” as “normal”.

Some disabilities we can see, when a person uses a wheelchair or someone whose appearance looks different than ours. We “see” they look different and then we behave towards them in a different way.

But there are so many people who have “invisible disabilities.” We can’t see their disability but it’s still very, very real.

We’re all born with a brain, but our senses send messages to our brain in different frequencies, creating different realities for all of us. Sometimes messages are misconstrued. This is called a sensory processing disorder. People with this invisible disability can be very sensitive to noise. For them, noise can either be too loud or too quiet. Or a crowded room can feel suffocating or exhilarating. Sunlight can feel warm and wonderful or it can feel oppressive and blinding. These different feelings and realities cause people to act differently in a seemingly innocuous situation.

A friendly pat on the shoulder may feel pleasant to many of us but for someone with a sensory disorder, it may feel like a very unfriendly wack with a sledgehammer.

The struggles are very real for people with invisible disabilities.They are expected to act “typically” but they are dealing with disabilities and sensory dysfunction that make it so difficult to just be “normal.”

As a therapist for behavior and cognitive development, I saw this all the time. Kids and adults would constantly strive to be “normal” when they were dealing with multiple invisible struggles. I worked with a beautiful “typical” looking five-year-old child who would not listen to her teacher. Let’s call her “Amanda.” Amanda constantly walked around, stumbling from place to place. She never sat during circle time and she walked like a drunken sailor, falling frequently.  Amanda didn’t speak and bumped into people constantly.

Her peers didn’t like being around her and teachers were at their wits end.

“What’s wrong with Amanda?”

“Why won’t Amanda just listen or talk normally?”

“There’s probably not enough discipline at home.”

“Her mother probably just gives her everything she wants.”

People jumped to these negative and hurtful assumptions and conclusions without knowing what invisible disabilities Amanda was dealing with. I worked with Amanda for a few days until I realized that she only heard me 20% of the time and there was something else plaguing her. I asked Amanda’s mother if she could be hearing impaired. “Amanda passed the hearing test when she was born. Her ears work,” Amanda’s mother assured me. There seemed to be something else making Amanda so irritable. I asked her mother to get her ears checked for fluid. I was hopeful that something as simple as a hearing blockage might be a factor in Amanda’s behavior problems.

As it turned out, Amanda’s ears were completely blocked by fluid. She constantly heard a swish-swish sound, and a high pitch ringing in her ears from water filling her ears.  When people spoke, Amanda heard what sounded like two dolphins talking to each other underwater.

If you had constant ringing in your ears and a swish-swish sound, wouldn’t you be spinning around and as annoyed as ever? I would.

Amanda didn’t speak because she couldn’t hear to learn how to speak. She got tubes to drain her ears and within a few weeks, her hearing went up to 100%. That horrible ringing noise stopped. Amanda’s brain felt peaceful for the first time. Finally.

What a world of a difference that simple change made for Amanda and her family.  With some therapy and kindness, Amanda now speaks beautifully and is a shining light to peers and teachers alike.

No one could  “see” the fluid in Amanda’s ear. No one saw that she was struggling with something invisible. Yet she was living in a torturous situation. High pitch ringing sounds are used as torture devices in some countries. No one knew because no one saw. Amanda’s struggle was invisible, but it was real. Some invisible disabilities are temporary, like Amanda’s but some are lifelong. Some are physical, some cognitive and some emotional.

But in reality, we ALL have something we’re grappling with.

Inclusion club aims to focus on ALL kids and ALL abilities. It’s the chance for all of us to come together and understand that we’re all struggling with something, whether we see it or we don’t. The focus is for kids with disabilities and for kids who are neurotypical to spend time together, break down boundaries and stigma and realize we all have a soul within us.

A young volunteer, Jacob, was helping out at a recent program and walked over to another boy around his age, Seth, who was standing on the side of the room. The two of them started chatting and then hung out the whole time. Seth, who looks like a typical teenager, has autism and extreme social anxiety. He wrestles with himself to even start a conversation with another person. Jacob did not know that Seth had a disability and chatted with him, talking about school and different video games. Seth was smiling and laughing the entire program. I couldn’t believe how well they were getting along. It melted my heart and I was so grateful.

The next day, I thanked Jacob‘s mom and asked how the volunteering went. She told me that Jacob had a great time, but he did not feel like he was volunteering. He said he had been talking to another boy the whole night and felt guilty for not doing more to help. I told her, “Are you kidding me? The other boy (Seth) has autism. He has such a hard time with friends. Jacob was chatting with him as if he was his fellow buddy which made Seth feel so accepted. Seth felt their conversations were real and laughed all night!!! I’ve never even seen Seth smile before!!”

Seth uses every ounce of his being to give the great performance of being “normal”, and tries to seem like all is good. Using that much  energy is exhausting and this frequently results in isolation for people with invisible disabilities.

So when people like Jacob walk over to the person on the other side of the room and interact in a way that feels like it’s just two buddies having a conversation, we create a space of empathy and inclusion.

We all may have an invisible disability in our lifetimes and we’d want others to treat us with patience and kindness. We all try to live in a box called “normal” But nobody is really normal. When you see somebody acting annoyed, or upset, they are probably struggling with something that we have no idea about.

Next time you see somebody standing in the corner of the room, go over to them and say “hello.” Don’t wait for them to come to you.

Every person has a soul and every person has a mission in the world. NOTHING was done by mistake or coincidentally. When we focus on these facts, the exterior melts away and we’re able to experience true inclusion and empathy. While we’re all different, we are also all the same. It’s normal that we’re different.

Normal is OUT

Kindness is IN!