Temporary or Permanent Disabilities

Time and time again I am reminded that my daughter Rachal's unobvious disability is a mixed blessing. I say this with a smile on my face. I smile because it is easier than crying. For 13 years I have been observing society make their first assumption when looking at my daughter and then assume their judgment. Let me explain.

On the outside Rachal appears to be every bit as 'typical' as the next 13 year old. She walks and runs like other children. She has a magnificent smile that lights up a room. She has the largest brown eyes that seem to take everything in around her. She is engaging and loves people from the moment she sees them. But this is where the similarities with other children her age ends.

You see Rachal is mentally around the age of a five to six year old. Due to 1,000's of seizures and a brain disease called Infantile Spasms Rachal's brain never progressed like a 'typical' brain does. Rachal also has ever so slight speech impairment. Her annunciation of words is not crystal clear.

The moment someone begins a conversation with Rachal they immediately realize something is not quite right. When simply easy questions are asked of her she will meet them with an appropriate response. While other more complex questions will really throw her for a loop. Rachal is not mentally mature enough to share that she does not understand the questions that are confusing her.

Rachal has a large capacity for memorized phrases. These phrases are taken from movies or television shows. For example; when Rachal sees someone with a Subway shirt on she will parrot "Subway Eat Fresh" to no one in particular. When a football player gets tackled she will parrot "That's gotta hurt!" taken from the movie Star Wars, when young Luke Skywalker was in the pod race and an opponent wiped out around a bend. We as her family know what she is doing we've been listening to her for years. We are familiar with her never ending reserve of memorized phrases.

Watching society observe, assume and judge Rachal based on her permanent inabilities has often hurt at different times.

A few months ago our family went out to dinner at Carrabba’s in Cape Coral. We were told our wait time would be around 20 minutes. We decided to wait outside along the side of the restaurant for our number to be announced. As we settled in next to the stone wall I was in awe of the peoples reactions around us. See Benjamin our oldest son, had broken his leg and was in a ½ leg cast and using crutches. I watched the reactions of the families around us. Many people smiled at Ben. Some even jokingly asked him what he was doing just before breaking his leg.

“Safe” I thought. They feel it’s save to speak to Benjamin. His disability was temporary nothing permanent about it. Even as Benjamin went to step inside to get drinks with my husband Ray, one man jumped up to hold the doors for him. I watched as society could handle this disability. It was if a temporary one could be dealt with, joked about and compassion could be felt.

Now, while this was happening Rachal has made eye contact with another family and their two beautiful blonde daughters that sat right across from her. The two sisters stared at Rachal. As Rachal began to speak to them about their purses which she thought were beautiful the older girl began to laugh at Rachal. My heart filled with pain. I waited for the parents to intervene on Rachal’s behalf. Surly they realized something was preciously simple about Rachal. Rachal began asking them about school and how they liked it. Rachal’s mental capacity does not put on airs. She is all heart right from the beginning of meeting someone. She just jumps in and begins a friendship. She does not have the shyness that most of us have when meeting someone for the first time. Rachal is Rachal.

I realized that because Rachal looked “typical,” spoke with a speech impairment and was not shy this family could not understand what she was doing. They avoided her comments and eyes at every turn. They could not step outside themselves to allow Rachal’s friendship in.

Within ten minutes they slowly one by one walked away to another side of the sitting area. My heart was breaking. On one side of me Benjamin was joking with total strangers about his temporary basketball mishap that broke his leg, while next to me was another side of society that judged Rachal’s permanent mental disability with a complete lack of understanding, so much so that they walked away.

Temporary or permanent disabilities. Where do you stand? Where does your family stand? Are we teaching our children about diversities that make us precious individuals or just the perfect people? When we see someone with a permanent disability do we immediately stare, label, assume and avoid direct eye contact. Or can we notice, realize and smile with compassion? We all have a choice to make. What will yours be today?