The Pile

A rare photo of my table completely cleared of its usual piles...except for the cat.

I can't shake it. It's always there. Every day, every week, every season of the year...

There's a pile on my dining room table.

The contents of the pile change periodically. But they always indicate a current "focus" of my life.

It might be a pile of Christmas cards with envelopes to address, or it might be the pile of thank-you cards that quickly follow behind.

I just emptied the table of the pile of tax forms only to be replaced by the highly anticipated "intent to homeschool" paperwork.

Sometimes the piles bring sadness, like when I have to fill out documents demonstrating our life with rare disease. But woven into those same sad piles are the jubilation of saying: "Oh my goodness, look how far we have come."

There are a multitude of random school supplies within the piles. Three-ring binders hold my Bible studies and prayer journals, post-it notes contain scribbles of assembly and senate bills that I am following, 3 or 5 subject notebooks with sections for blogging-for planning-for checklists, and pens and pencils that inevitably leap out of our junk drawer and make a home on the table...they represent the stock-piling of years of school supplies being purchased that we never really used because Evie's school supply list was different than the other kids.

I have to shift the piles to an alternate location when we have guests, and I usually re-evaluate my piling compulsion each time that happens. But, I've grown accustomed to it, and realize now that it's not a sign of incompetence or laziness-this is my filing system, this is how I get things done, this IS how I "do what I do."

Do YOU have piles in your life? Do they help you or hinder you? 

I Despise that Word...

Our girl DJing with Jeff on the K-Love Afternoon Show

***Be advised that this post contains spoilers for both the book and movie referenced within***

I was pleasantly surprised when my Washoe County Library suggested Flowers for Algernon (Daniel Keyes, 1958) for me on my Overdrive app. I thought it would be a "blast from the past." Originally, I read "the book" in an abridged version in 8th grade. I didn't realize it was abridged until I checked out the book 15 days ago and started reading it again for the first time since 1988.

I recalled the story as being similar to the movie Awakenings (1990), with Robert De Niro and Robin Williams. In both plots we find a man who has intellectual delays and is chosen for an experiment to increase his intelligence. I recalled both stories also resulted in success of the experiment for a brief time, but also coming to a tragic end as you watch the protagonist regress back into his original pre-experiment state.

Fast forward to my current life...I have a child with special needs which include blindness,  and intellectual delays. I have been through numerous trainings on self-determination and advocacy for those with disabilities. I am also keenly aware that there are some people in our lives...in our communities...in our world, who still believe those with a lower IQ are not actually human beings with thoughts, feelings, or rights.

Flowers for Algernon has given me the perfect narrative for why I despise the word "retarded" (I would love to from here on refer to it as "the R word" but I know I had to spell it out in order for those who read this to be on the same page with me.)

You see, people use the word ALL THE TIME to describe things that are weird, bad, messed up, or displeasing. It is NEVER used in a positive manner. NEVER. People also like to use it as a hybrid of words to accuse or lash out at others "f*@K-tard" or "beau-*@rd" are often references I see used on social media. Again, the word is being used to hurt, to assault, to harm. I was even disappointed when I read the book Wonder and saw that the protagonist in that story who had a physical deformity was concerned with convincing others that he wasn't "re*@#ded." He was hurt by being called THAT word and wanted to ensure that people knew he did NOT have an intellectual disability.

Not so long ago, a person like my beautiful daughter would have been put into an institution for being diagnosed as the "R" word. It was a CLINICAL diagnosis. It was a medical term. It was a condition which brought shame, fear, and the certainty of a life shut away from society. In Flowers for Algernon, as Charlie gains his intelligence and recalls memories from his childhood, he starts to realize that he was never actually seen as a human being. The doctors who helped "make him" claimed that he wasn't a human being until they made him so, until they increased his intelligence.

When Charlie realizes that he's regressing, and he begins to understand where this decline is leading, he asks to go to the institution where he will be placed once he no longer has his higher IQ. And this is what Charlie writes in his journal:

As I drove out of Warren, I didn't know what to think. The feeling of cold grayness was everywhere around me--a sense of resignation. There had been no talk of rehabilitation, of cure, of someday sending these people out into the world again. No one had spoken of hope. The feeling was of living death--or worse, of never having been fully alive and knowing. Souls withered from the beginning, and doomed to stare into the time and space of every day. (Keyes, 1958)

So, why do I despise the "R" word so much? 

Because the "R" word is a remnant of a time in our history when it was okay to send off those with intellectual disabilities to wither away in a facility so none of us had to watch.

I despise the "R" word because it is an unfortunate representation of our current life, when people who have disabilities are viewed as "less," as "flawed," as a mistake. Somehow, we still live in an age when we think it's justified and within OUR rights to end a pregnancy because we think the baby might be born with a disability. We still live in a time where we pick on the kids with special needs in school because we need SOMEONE to pick on, and they won't really understand that we are making fun of them anyway.

I despise the "R" word because, even when you say, "but I would never describe your daughter that way" you are still describing SOMETHING that way...and it's never a kind description, it's always a description of loathing.

I must admit, I haven't enjoyed this little stroll down memory lane the way I thought I was going to. It has been a painful read for me, and I understand now why we read the abridged version in 1988...but I don't think it was a "coincidence" that I had this book suggested to me at this time. I had some things I needed to say, and I guess this gave me a launchpad for doing so.