Books focusing on a disability experience

Summer is prime time for reading, but you don’t have to slip the latest John Grisham or a bodice ripper into your beach bag.

There are a lot of great reads – fiction and nonfiction – about people with chronic or age-related disabilities.

Books help readers gain a sense of themselves and others. Understanding people with different challenges enriches a reader’s life.

I recently met book-lover Hanagarne in the pages of his memoir, The World’s Strongest Librarian.

Josh defies the stereotype of the sternly quiet, bejeweled spectacled, bunhead of a librarian.

He’s a hulking 6-foot-7 and so strong from power kettlebell lifting that he can easily rip the thick Salt Lake City phone book in half.

What makes Josh an improbable librarian is that he himself is “un-shushable.”

Josh has Tourette’s Syndrome, a rare neurological disorder characterized by involuntary physical and vocal tics. My only previous knowledge of Tourette’s came from the TV show “L.A. Law” in which a character with the disorder could not reign in his urge to swear and utter racial slurs.

Tourette’s seemed too bizarre to be true until I read The World’s Strongest Librarian and learned how Josh experiences it.

He’s a good sport about it. (What choice does he have?) He writes about his hooting baby owl sound. The slobbering dog sound. The finishing a round of wind sprints sound. His wind-rustling-through-a ghost town sound. The frog in his throat that triggered persistent throat clearing.

Then comes the sobering realization that Josh’s headfirst dive into strength training is a valiant attempt to master his involuntary tics.

What’s lifting a few hundred pounds to one who has been carrying much heavier impediments since childhood?

With humor and candor, Josh finds ways to break the shackles of other weighty issues: loneliness, geekiness, infertility, an inner spirituality at odds with the theology of the denomination in which everyone he loves remains blissfully affiliated.

This is a warts-and-all story told a guy who defies stereotypes – a power-lifting librarian whose literary crush is Fern, the farm girl who saved Wilbur in Charlotte’s Web.

There are many other good books that provide a window into the experience of living with a disability.

Here are a few novel suggestions that will deepen your understanding of aging or disability.

Comment to add your favorites.

  • Havana Heat by David Brock
  • The Speed of Dark by Elizabeth Moon.
  • Flowers for Algernon by Daniel Keyes.
  • Where the River Turns to Sky by Gregg Kleiner.
  • Icy Sparks by Gwen Rubio
  • Lottery by Patricia Wood.

Use It Or Lose It!

Disability Network/Lakeshore staffer, Chris Wistrom, wanted to share some thoughts with all of you!

The other day I was working outside on my farm moving hay and clearing the barn out for some new construction work that was scheduled to begin shortly.  I was struggling to move a large shelving unit and my friend stopped by.  He asked me why I was being such a martyr trying to move the shelves by myself instead or asking for help.  I was surprised by the question and quickly responded, “Because if I can do it, I want to!”  That, in turn surprised him.   I went on to explain that although I have a disability that makes it difficult for me to do some things, and this was one of those things.  As long as I was able to do it on my own, I wanted to.

I come from the old school of “Use it or lose it!”  I know there is a time coming when I won’t be able to “bull” my way through, but I want to put that time off as long as possible.  I don’t want to be more dependent on others.  I’m that way now in several areas and it frustrates me.  Yes, I understand that we have to accept our limitations and work with them, through them or around them, but I am not going to give up one inch of ground until I have to!  If I allowed others to always step in and take care of the hard parts, then pretty soon, even the easy parts would get hard…at least, that’s how I feel about it.

I think that goes a long way toward explaining why people with disabilities refuse help when it’s offered.  We don’t mean to be ungrateful; when we really need help we’re glad it’s there.  But we also don’t want to have people do things for us that we are still able to do for ourselves.  Please don’t take offense when I say, “No thanks!”  I don’t want to hurt your feelings.  I’m not trying to be a martyr; I just want to be as independent as long as possible. 

Have you ever offered to help someone with a disability and had them refuse?  How did that make you feel?  Did you understand the reasoning behind it?


Guest Blog by Chris Wistrom, Independent Living Specialist

I’m a gerontologist.  There are people who look at me like I’m from outer space when I tell them that, but really all it means is that I specialize in what happens as we age.  I’ve always found it fascinating to watch how the human body changes and adapts as we get older…now I’m living it!

There are many good things that come with getting older.   One of them is that we tend to become “more like ourselves.”  By that I simply mean that those things that make us who we are become easier for us to express.  We don’t try to conform so much.   Rather, we are more likely to stand up for our views and express our opinions.  We know who we are and what we want.

Unfortunately, with age often comes disability.  Certainly, not everyone in his or her golden years has a disability, but the likelihood of developing a disability increases with age.  While you only have about a 17% chance of having a disability at the age of 45, by 60 it’s increased to 33%.  By the age of 80, it’s closer to 97%.  Yes, you read that correctly: 97%.

Some of the more common disabilities that come with aging:

  • Diabetes, along with all its’ offshoots such as glaucoma, neuropathy, skin ulcers, etc.
  • Arthritis
  • Hearing problems.  It may not be total deafness, but most of us who are moving into our “golden” years find that younger people tend to mumble!
  • Vision problems.  I never wore glasses until I was in my 40s.  Now I can’t see to drive without them.
  • Heart disease
  • Liver disease
  • Kidney disease
  • Stroke
  • Dementia

The list can seem endless.  There are functional issues too, such as incontinence, mobility issues, weakness, etc.

The big plus that balances all of this is that there are many, many supports in place to help us cope with the problems that come with aging: better medical care, more medications, excellent support organizations, and a wide array of programs designed to help us age with grace.  Let’s not forget that part!