disabilities

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.

Life With A Service Dog

“Oh my God, your dog is just the cutest thing ever!  Can I pet it?”

 “You are so lucky you can take your dog with you everywhere.”

 “My cousin’s friend’s husband has a black lab that looks just like yours!”

 “Well you don’t look disabled.”

Guest Blogger, Kaitlyn Weimer, provides education and training opportunities for business and individuals.  To contact her visit http://servicedogseminars.weebly.com/

Guest Blogger, Kaitlyn Weimer, provides education and training opportunities for business and individuals.  To contact her visit http://servicedogseminars.weebly.com/

From the gushing puppy lovers to the skeptics, the lives of service dog handlers are full of…well, comments.

I have a degree in Assistance Dog Education, which is a fancy way of saying I went to college to learn about service dogs.  Every class I took related to the assistance dog industry, and one of my responsibilities as a student was to have a service-dog-in-training with me at all times.  I have experienced firsthand some of the commentary that service dog handlers hear every time they step out of their homes.

While most people mean well, the constant barrage of comments and questions can be exhausting and annoying for the service dog handler who just wants to buy groceries in peace.  Most people who came up telling me stories about distant relatives’ dogs who “look just like mine” didn’t realize it was the twelfth dog story I heard that day.  

My life revolves around educating people about service dogs, so I didn’t mind too much.  But plenty of service dog handlers do!  A service dog (or assistance dog, as they can otherwise be known) is supposed to be considered like any other equipment.  Like a wheelchair or a cane, a dog is a tool that helps mitigate a disability.

“But that’s so cold and heartless!” you say.  “That dog is a living creature, so much more than just another machine!” you tell me.

And you would be right.  A service dog is one of the most fascinating and incredible creatures in this world.  And while being fluffy and adorable certainly has its advantages, it can also create frustration for the service dog handlers who have to deal with the public attention, answering the same questions and comments every single day. 

I used to joke with my classmates, who were also service dog trainers, that our dogs’ vests should just say, “My name is Fido, I’m 2 years old, Yes, I’m a service dog, and No, you can’t pet me.”  Maybe then we could get our errands done in peace.

But joking aside, these questions and comments can also be unintentionally rude.  When you say, “What does your dog do?” all we handlers are hearing is, “So what’s your disability?” 

“Are you training him?” translates to “You don’t look disabled.”

So next time you see a service dog, just take a moment to think.  Are you wanting to say something that the handler has probably heard hundreds of times before?  And could your question or comment be taken the wrong way?  If the answer is yes, then please stick to admiring the dog from afar.

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?

Training Service Animals for People With Disabilities

Kaitlyn Weimer brought her college roommate home to Hudsonville for Christmas vacation – and played fetch with her, too.

Kaitlyn, 19, is studying to become a service dog trainer at the Bergin University for Canine Studies in Rohnert Park, Calif., the only accredited school of its kind in the world. It’s where the term “service dog” originated.

Most certification programs for dog trainers run 12 to 16 weeks, but Bergin’s offerings range from the tertiary to a master’s level degree in dogs.

Kaitlyn Weimer and Ireland

Kaitlyn Weimer and Ireland

“I want a career that feels significant and helps people,” said Kaitlyn, a 2012 graduate of Hudsonville High School. “Yet dealing directly with people all the time would be, for me, kind of tiresome. It’s easier to have patience with dogs. They’re really amazing, especially in the way they can help people and the environment.”

As a capstone project, one of the other 50 students at Bergin taught his own dog to sniff out the feces of the Emerald Ash Borer – a measure that could help save ash trees from their arch nemesis.

A lifelong dog lover, Kaitlyn hopes to return to West Michigan as a guide dog trainer. One day, she says she may seek additional training to specialize in training diabetes-alert or seizure-alert dogs.

Each semester Kaitlyn is paired with a young service-dog trainee – “a 24/7 homework assignment,” according to Kaitlyn -- that will eventually be donated to someone with a disability. The two-week trip home for the holidays was Kaitlyn’s last big outing with Ireland, a year-old Black Lab who weighs 60 pounds.

Before the trip, Kaitlyn had to train Ireland to lie quietly for hours at a time in a confined space approximating the area under an airplane seat.

Instruction taught in a dog law and ethics class proved valuable when changing her airline ticket after Kaitlyn found out Ireland would be accompanying her to Michigan as part of their training.

The ticket agent initially applied surcharges for rebooking and for upgrading Kaitlyn to an economy seat that would provide more room for Ireland underneath.

Kaitlyn pointed out that both changes were “reasonable accommodations under the Air Carrier Access Act, which governs service-dog access in the skies, and should be made without additional charge to the handler.

“Airlines know this, but it’s not something that comes up all the time for their representatives,” Kaitlyn said. “Knowing the rules really helps.”

Here are some basic rules:

·     A service animal is defined as an animal that is individually trained to do work or perform a task for the benefit of an individual with a disability, which may be physical, sensory, psychiatric, intellectual or cognitive.

·     People have a right to ask the handler what tasks the service animal performs for them. However, it’s out of line to ask the handler to disclose his or her disability.

·     Service animals can be removed if they are not housebroken, not groomed, or not under the control of their handler. The animal does not have to be on a leash. The animal must be permitted as soon as its behaving like a service animal again. Handlers can be charged for damages the animal causes.

·     Although labs and Golden Retrievers are the most common choice for service animals, no breeds are disallowed.

The federal Americans with Disabilities Act (ADA) covers access in public places, and places where the public is invited. ADA does not guarantee access for animals whose only “work” is providing comfort. Because of the legal separation of church and state, churches are an exception.

Once Kaitlyn’s right to have Ireland at her side at Bible study was challenged on grounds that another attendee was allergic to dogs.

Common sense usually prevails when there’s no law stating who has rights. Kaityn and Ireland were not ordered to leave the church, but they started attending an affiliated Bible study nearby where allergies were not a concern.

Dogs don’t have a monopoly on the service animal industry. Miniature horses (weighing 70 to 100 pounds and 24 to 34 inches tall) are also accepted as a “reasonable accommodation.” Horses are stronger than dogs and therefore better suited for handlers who have to be pulled.

However, the Air Carrier Access Law draws the line on snakes, spiders and rodents. They’re not service animals.

If you have questions about service animals in public places, please contact Disability Network/Lakeshore at 616-396-5326.

It Won't Happen To Me

Photo: American Red Cross Guide - Preparing for Disaster for People with Disabilities and Other Special Needs

Photo: American Red Cross Guide - Preparing for Disaster for People with Disabilities and Other Special Needs

Everyone is attracted to tips and strategies promising greater organization, time management, and stress relief, but how often do we become enticed by the idea of emergency planning?  For many of us the answer is probably rarely or never.  A fire resulting in the complete loss of a home, severe weather ending in a state of emergency, or the threat of terrorism is something that happens to other people, simply stories we see on the nightly news. 

In reality, devastation from fire, straight winds, and blizzards are more common in west Michigan than we typically admit; and unfortunately over the last few years, Americans have learned that we are all at risk for acts of terrorism.  For many individuals with disabilities, whether physical, mental, sensory, or health-related, planning for a potential crisis should be a priority.   Many consequences can be avoided or at least diminished by thinking proactively. 

To create broad awareness, FEMA and the American Red Cross have compiled a guide to assist individuals with disabilities and the elderly to develop a plan specific to their personal needs.  The packet entitled, “Preparing for Disaster for People with Disabilities and other Special Needs” can be found on-line at http://goo.gl/cUSqT.  

It outlines four critical steps:

      • Acquire information    • Collect supplies
      • Establish a strategy    • Regularly review and practice your plan

When gathering information, individuals should:

·     Identify friends, family, and others who are able to assist them

·     Evaluate which tasks they can perform on their own

·     Educate themselves on local resources available to offer support in the event of an emergency

Developing an action plan includes:

·     Open discussions with those that currently provide support such as personal care assistant’s

·     Recording names, addresses, and phone numbers of your support system

·     Mapping “escape routes”

·     Arranging for someone to care for your pets if you are forced to go to a shelter

The booklet also includes a helpful checklist of supplies to have on-hand in your home and automobile, and a list of actions to conduct regularly to ensure your strategy and supplies are up to date and ready when needed.

References:

American Red Cross. (2004, August n.d.). People with Disabilities. Retrieved from American Red Cross: http://www.redcross.org/images/MEDIA_CustomProductCatalog/m4240199_A4497.pdf