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Hello

Welcome! Lenkaland shares my adventures in creative photography, raising kind children, writing, living with chronic illness, raising a daughter with dyslexia, and swimming with mermaids. Hope you have a nice stay!

When I first learned about disability culture, I heard that writing about a disabled person was wrong.  A person should always be referred to as someone with a disability.  Why should that matter? I thought.  It isn't a big difference on paper. At that point of my life, disability and the person were one and the same.  Being disabled, having a disability, what did it matter?  You were still disabled.

I have since learned that how we talk, especially how we self-talk, affects how we think.  A disabled person is a person described by the word disabled.  Disabled leads the sentence.  Disabled defines the person.  Disabled owns the person and becomes the dreaded label that can only hold someone back.

Flip the words around and the entire meaning changes.  Who is the owner now?   A person has a disability along with a home, a family, and a red corvette. The difference is small on paper and huge in meaning.

Lately, I have heard more discussions about the words used to define conditions.  My own condition, Charcot Marie Tooth, was once Charcot Marie Tooth Disease.  Now many websites call it Charcot Marie Tooth Disorder.  Many people leave the ending off altogether.  Why?

Why does it matter?

Disease implies sickness, and sickness can be caught or passed along.  Disease sounds toxic.  And while I won't say Charcot Marie is all fun and games, most of days I do not feel sick.  In fact, many doctors have said I'm healthy.  So how can someone have a lifelong disease and be healthy at the same time?  It becomes part of the self-thought, too, to be diseased.  Which is no fun.  And there is an underlying message to fight the disease.  When, in reality, being honest and making healthy choices for your individual body will serve you better in the long run.  A self-image where "we're in this together, how can I best care for my body so it can best care for me?" is probably a much healthier approach to managing the genetics instead of treating the faulty-coding as a disease to be medicated and overcome.

Lately I've seen CMT called a disorder instead of a disease.  I suppose I would choose disorder over a disease, since it is an error in genetic coding.  However, disorder again implies a need to fix things, a need to set my life in order, by overcoming the conditions on my plate.  These days, I say that I have a neuropathy.  To me, this describes the condition without judgment or assumptions about how I should handle my daily choices.

I heard a suggestion this week that people with Autism Spectrum Disorder would rather hear Autism Spectrum Difference.  More than one kids has said, Why should I try so hard to become like you?  I'm direct, I have ideas, I'm happy with who I am.  Why the pressure to fit into your world?

Now there are certainly skills needed to succeed that all children need to learn (and some adults) like a household budget, eating healthy, etc.  But why emphasize only one way of solving a problem, or one way of relating to others?  If texting and email fulfill the needs for social interaction, why force face-to-face stressful situations?  The very word Disorder suggests that they need to be fixed.  Maybe not.  By today's standards, Einstein and Mozart may have been diagnosed autistic.  Are their contributions any less significant if we decide that they had a disorder?

Temple Gradin has a great talk about this topic. We'll add the link here.

Which leads me to my next question- if we're going to redefine how we talk about disability, what about that word?  Shouldn't I say differently-abled?  To me, there is paying attention and then there is truth.  The truth is that I do have limited abilities.  I have many many abilities, but I also have challenges.  If I talk about my experience as sunshine and roses, I diminish the very real challenges that I face every single day.  To me, disability is an apt word because it shows my reality.  I do have limits.  Not bad or wrong, but real limits, and ignoring them will not make them go away.

I am so grateful to our larger world for caring about those limits.  I am grateful every day for accessible parking, or accommodations at events that all me to participate.  Society never had to create accessible (or disabled) parking.  We chose to because we care about each other.  To me, it is a generous decision that is a huge help in my life.  I am referring to parking as accessible rather than disabled, though, because words matter.  In fact, in my family we call them Blue Spots, which names the color and doesn't carry any less-than connotations.  My daughter, who is six, asks why we park there (I don't use them all of the time, but on difficult days, they make a world of difference) and I tell her that Mom needs some extra help and aren't people wonderful for giving that to our family.  She's fine with that explanation.

On that note, this week I'll be reviewing my phone, the HTC Droid Eris, and how it helps me get out and about in the world (and how it might help me more!).

Writing about how we define the world has raised more questions for me.  Over the next weeks and months I'm going to pay attention to how the world talks about disability issues.  I wonder . . how do we redefine the world?

Links: The World Needs All Kinds of Minds, Temple Grandin A Guide to Respectful Language

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Blur of Days