New Blog - Wheelie Accessible Cooking

Interested in simple, healthy recipes designed for those with low energy or looking for tips on how to cook with a disability?

Check out my new blog Wheelie Accessible Cooking, written for those with visible and invisible disabilities - as well as for beginning cooks or those looking for healthy recipe ideas.

It's going to feature information and resources from around the web to help make it easier to find what you may need as well as posts about actual cooking experiences...with reachers...and aides...and whatever else I need to get something to eat!

Co-author Meredith Gould will add her observations, tips and comments in posts. Not to mention her design skills.

Go on over and check it out.

Interdependence or the art of making things happen

Nothing happens until something moves.
Albert Einstein

As a quadriplegic, I rely on an interdependent lifestyle.  I help others, they help me. What can look from the outside like a one way relationship - often perceived that way due to society's assumptions - is really interdependence.

There's no disputing that physically speaking I rely on other peoples' help much more than they could ever rely on mine.  In order to make things move in my world, at least physically speaking, I need assistance, whether it's from technology or human beings.

It took years of frustration before I would or could admit that to myself or others. I fought off all kinds of assistance, trying to do things the way I "used to", denying the extent of my disability. I  told myself I didn't need this or that. I was dubbed a "para-wannabe" by my paraplegic friends, who would roll up to get me out of jams caused when I tried to do things with my arms or hands and couldn't quite pull it off. They understood, some having gone through a similar process.

It's called acceptance.  Acceptance that nothing was going to happen, nothing was going to move unless I had some physical help was a really tough thing.  I angrily told myself that I knew what the repercussions would be.  To me, the idea of dependence on humans was much harder than on technology. Technology is available 24/7. Human help requires scheduling and compromise and reciprocity.  That was very difficult for me because I prided myself on being independent -- as it turns out, to a fault. This is not uncommon in our society, which often preaches independence to an extent that ignores real human needs.

Actually I didn't understand what interdependence even was or looked like. As I began to meet and get to know more people with disabilities, I learned more about interdependence. Blind friends could tie my shoes. I could read to them. And the list went on and on - all of us have something to give and it doesn't have to be done in a one-up, one-down way or via a 'charity' model.

I  soon realized that interdepency was a better way to live actually, that it could be life enhancing, rather than restrictive.

So here's the thing - when an aide helps me cook and learns how to cook in the process, a skill she/he takes with him/her into life, that's interdependence.  When a friend who always checks on me when it snows suddenly needs something which I can provide - and there are many things I can - and I'm there for her, that's interdependence.

Living interdependently keeps life moving for all of us and is something  I wish I'd learned many years before acquiring my disability. It has enriched my life in ways I never imagined possible.

So what can we learn from this?

Here's a travel video entitled Disabled Guide to Guell  Park in Barcelona that illustrates a common issue in access and travel situations - poorly marked trails.

You'll see that the disabled traveler proceeds a long way up a trail only to find two steps.  There is an alternative way to go that's accessible - but none of this was marked to avoid having this happen.

Happens all the time. You're sitting there in your mobility device thinking "If only this had been marked..."

A reader asks....

why do I post videos and who is my intended audience?

Good question. So I'm answering it in a blog post.

I post videos for different reasons.  Some are to provide information to newly injured spinal cord folks and/or their friends and families. Others are to disseminate information to broader groups, such as when there's a new site starting up. Some videos tell the stories of people with disabilities, folks who use YouTube as a medium.

My reasons for posting videos are as varied as the intent of those who put them up on YouTube.

As far as my intended audience -  that has a broad answer as well.  Since the videos are all different and created for different audiences, so too are my postings.  I have readers who are coming over here from the disability community, from faith communities and, as we all do on public sites, from visitors.

The reason I blog is listed way up there right under the name of the blog. How I go about doing that sure can look different all the time...which is how life is too.

Adapting - paraplegia

Nicole, a paraplegic, does a great job of showing how she uses adaptive equipment/technology in her daily life.

The Stories People Tell

I'm always amazed by what people tell me during interviews for the aide job. During these rough economic times, it seems there's one story after another about 'why I'm applying for this job'.

There are parents looking to earn extra income to help put kids through college, college kids looking to earn income because there parents are doing poorly financially or have lost their homes or jobs, and single folks needing a second - or third- income just to afford cars, car insurance and a place to live.  Some folks apply for this position as a fourth job.

Sorting through all of these folks and their stories isn't easy. An online friend on Twitter told me the other day she would say a 'prayer of sorting' for me. I welcome that.

Sometimes I have to say no to someone who may need work and could do the job, but just isn't going to have the energy or time for it.  This is really better for everyone because I'm literally depending on these folks to be my arms and legs. If they don't show up or show up exhausted, it's not helpful and can wreak havoc in my life.

I told an applicant about that today. I told her my story. She looked at me thoughtfully and said she would never want to do that. I know, I said as kindly as possible.

I respect everyone's story. I really do feel for people.  I like people - a lot. My heart goes out to them in these tough times.

But I'm learning that in these interviews there has to be room for my story too. The story of aides leaving after a few weeks because they're suddenly moving or because they didn't plan child care and want to bring their kid along, etc etc.  Explaining how that causes havoc to me and my friends. Telling the story of what it's like to get a few weeks notice when it takes more than that to replace someone.

If telling my story prevents me from having to go through the same thing with someone new who didn't plan out exactly how they were going to actually show up and do the job, it's well worth it.

One thing this is teaching me- we need to listen to each other with more care and more often. So many people seem to have no one to talk to - it's so very sad.

If it only was real...

Clearly one of the reasons I quickly placed an ad to replace one of my aides is because technology doesn't  - yet- provide alternatives, like the Wafflebot. 



Really this small rolling waffle serving (complete with syrup) robot could be the answer to my prayers. If it was real.

Special effects coffee spill :Life as a quadriplegic

I didn't just spill that coffee.

No, it was worthy of a special effects award. I turned the corner in my wheelchair (okay I was going fast), my swing away tray swung out and hit the wall and the coffee mug flew into the wall, spewing coffee everywhere.

It covered quite a lot of real estate- most of the five foot hallway and part of the entry into the kitchen.

Then my cat Riley decided to fully investigate and began to jump from paw to paw because the coffee was hot. My other, smarter cat Kady held back practically signalling him 'Get away from the liquid. Get away from the liquid'.

I got my quad reacher and used paper towels to soak up most of it.  My aide will be over later and can get the rest up. Which reminded me-

Oh right. Yesterday my aide told me she's moving to Hawaii in three weeks.

I'm happy for her. Really. Except that she just started the job two and a half weeks ago.

I don't spill my coffee that often, considering how none of us around here ever seem to have time to get to wheelchair maintenance and tighten loose trays, etc. and the fact that my mugs don't fit my cup holders and that I can't hold a cup of coffee.

So I'm ahead of the game statistically spilling it now. Gives me time to find another aide.

And maybe, just maybe, make time to order a mug that does fit in my cup holder.

Nonvisual Wayfinding

I ran across this video which educates a bit about how blind pedestrians navigate.  Posting it to encourage pedestrian safety awareness by drivers. A big shout out to all my blind friends up at Land of the Vikings this week for Ski for Light!

And so it (my New Year's resolution to blog) goes

In the scheme of life, being too busy to blog when good things are happening is not a big deal. I will try harder to get more writing up.

However, I can't resist linking to something that came across my desk.  Plaid headphones.  I'm calling them Catholic schoolgirl headphones.

I could have endured eight years in a plaid uniform jumper better if I'd been able to sport these.  Just sayin'

Valuing Life, Whether Disabled Or Not

Great piece from 2005 on NPR by writer and quadriplegic Ben Mattlin.

My favorite line: "For me, if there is a heaven, it's not a place where I'll be able to walk. It's a place where it doesn't matter if you can't."