Journies

My daughter recently went with me to a visit with my doctor. I'd had a frightening episode of extreme dizziness, which turned out to be nothing at all worrisome. While we were at the clinic, however, my child, my best friend, who should have known better, suggested I schedule baseline testing for potential memory loss. I was incensed! As with all family skirmishes, no time, place or mustering of self-control, would have done anything other than make matters worse. 

     Thank God for the young physician, who knows me, and knows I have a an eidetic memory. The doc did not blink; she simply changed the subject ... immediately. Memory loss seemed a potential blessing, once we'd left the clinic. It was a bad thought, however, because dementia mows down its victims with ruthless indifference. 

     Then I remembered what a great tool journaling is for alleviating pain, physical, mental and emotional. It helps with perspective, as well; my journals help me view my life as a progressive journey. There are many software options for journaling, not to mention a spectrum of reasons to journal. Shared or not, injuries, health crises, acquired or long existent disability make journaling a particularly relevant stress management tool. Even a "pain journal" can be very revealing, if shared with a physician. Blogging is a kind of journaling, and so accessible, even for a novice.

     Not knowing where to start may be the most difficult obstacle to overcome. Believe me, whether you are a reader, writer or neither, millions stop before starting. I read voraciously and write professionally. My angst springs more from an unstoppable inner-critic than from writer's block. It is not The Great American Novel, but I tear out the page I've just written, to start again, and repeating. I don't recommend this mindset. It may help to begin with a guided journal, such as the journal that accompanies "The Artist's Way" or "Peace and Plenty." There are many options available in bookstores, including beautiful blank or lined journals to complete and keep. A journal is a personal, intimate, production. It is your creation, so create at will, and let the devil catch up the rear.

     I've seen journals by journalists, one of the most creative of which was Dan Eldon's "The Journey Is The Destination." Dan Eldon, a British photojournalist, artist and activist, was stoned to death in Mogadishu with three colleagues in 1993. He was twenty-three years old. If you have never read his journal, find it and buy it. This is not the kind of book to borrow or rent. It is a masterpiece. Here is another suggestion. If, indeed, you know an elder, or you are an elder with early memory loss, recording a journal (and, perhaps, later, writing a life story from it) would be an immensely fulfilling project. Everyone has a story; our stories are the treasury of human experience.

Those with dementia are still people and they still have stories and they still have character and they're all individuals and they're all unique. And they just need to be interacted with on a human level. -Carey Mulligan

Start growing a journal for yourself or someone else today.

Watch Your Language!

Come again? You said ...

Mohandas Ghandi made one of the most moving declarations of the Twentieth Century. It was a single sentence. Anyone who has seen Ben Kingsley in the biographical film, Ghandi, has heard this quote: "I am a Muslim, a Hindu, a Christian and a Jew, and so are all of you." We are all, also, broken; the broken places may be healed, may be stronger than before, may not show. Nonetheless we all break one way or another, at one time or another. So I fond myself wondering, recently, about the changing etiquette of disability terms.

We should not judge people by their peak of excellence; but by the distance they have traveled from the point where they started. -Henry Ward Beecher

One or two things I've discovered. Person-first, or people-first, language is a good place to start. Generally accepted as polite, it is to use as a rule. However, I've also learned it is not universally acceptable in the Disability Community. 

In any event let's begin with person-first language, because it helps eliminate outdated, downright ugly, labels. Here are examples of terms that are offensive and, for each, the correct descriptive:

1)   Has a birth defect vs. Is a person disabled from birth, born with a congenital disability;

2)   Palsied, has cerebral palsy vs. person who has cerebral palsy;

3)   Cripple(d) vs. person who needs mobility assistance;

4)   Deaf and dumb, deaf mute vs. person who is deaf and does not speak;

5)   Deformed vs. person who has a physical disability;

6)   Emotionally disturbed, imbalanced vs. person with an emotional disability;

7)   Handicapped vs. person with a disability;

8)   Hunchback(ed) vs. person with a spinal curvature;

9)   Insane, deranged, deviant (and all offensive adjectives) vs. person with a mental illness;

10) Midget/dwarf/cretin vs. person who is small in stature;

11) Mongoloid vs. person with Down Syndrome;

12) Normal vs. able-bodied person, non-disabled person;

13) Retarded vs. person with a cognitive disability;

14) Wheelchair bound or confined to a wheelchair vs. person who uses a wheelchair.

While using the correct term avoids socially and politically deadly mistakes, groups like the American Deaf community and some Austistic people/Autistics prefer not to use people- or person-first language. Their preference stems from the view that their disabilities are part of who they are. Some also feel, using person-first language turns a disability into a negative. 

Weeding out nasty labels, such as spastic or retarded, is not just politically correct. It is a question of social acceptability and accuracy. It may just be a step toward empowering language, but it is an important skill.