Saturday, January 15, 2011

Having the coffee set up

I'll bet a lot of people don't think much about getting themselves a cup of coffee in the morning. I didn't either until I acquired my spinal cord injury

At that point I learned that planning was key to having independence. If someone sets up what I need I can make a cup of coffee, for example. If I have a certain kind of coffee maker and that assistance, I can do what others do.

I hear and read stories all the time about what a tragedy disability is. That's just not true in my experience. What is tragic is how we still leave folks without what they need to be as independent as possible. Being dependent for things you can do for yourself with planning is limiting and robs people of self esteem. It can also cause more work for caregivers. Its a lose lose situation. I believe that it stems from an attitude that disability is inevitably a sad, tragic and life ending event. That's a ridiculous approach.

Yet every time I train new aides I'm reminded how few people understand how much a disabled person can do with planning.

When I first bring a new aide in, he or she needs to learn the way I do things and, more specifically, how things need to be set up so I can manage to be independent in their absence. At first people move things around, not realizing that leaving a reacher out of reach causes havoc or not setting food up so I can get at it leaves me hungry. They take out a folding chair and leave it in the middle of my kitchen, not realizing that my wheelchair won't roll around it. The list is endless but the bottom line is that once they catch on, they get used to how things need to be done amd it ones as natural to them as the way they set up things in their own home. We all have preferences as to where we keep things. It really isn't any different.

But in order to get to a place of cooperation, everyone needs to be on the same page. Well meaning friends and relatives who place things out of reach assuming we can't do things or patronizingly refuse to set it up the way we need it or keep it that way are more of a disability than our disabilities are.

Need to go drink my coffee now. Always tastes better when I get it myself


Ruth said...

The following comment was left by:

jenniferfitz ( has left a new comment on your post "Having the coffee set up":

Yes! Yes!

I think most people just don't think through how much a small thing that is no big deal to them can be such a problem for someone else.


Practical tip: In my most recent stint of wheechair use, I put down masking tape boundaries for all the furniture. Then the kids (and spouse) could easily see what pathways they needed to keep clear.

You might also do something like have someone mark red zones and green zones on counters & such. Things in the green zone are in reach, red zone means they've stuck your things too far away.

And you probably already do this, but FYI for other people: A checklist of all the little things like the coffee set-up or sweeping the cat food is probably the third thing for giving to caregivers and visitors. I'd organize it logically so it is easy to remember, tape to the walls, and then have a "new items" page of it's own, so that experienced helpers can easily see what has been added recently.


I think this to me is the most overwhelming part of disability. Knowing that it would take so little, but that these small odds and ends can be what turns a possibility into an impossibility.


Ruth said...

Sorry, my voice recognition clicked in the wrong spot and I had to post your comment another way.

Thanks so much for your ideas.

I have a list like that. It's a wonderful time saver. I think it's also interesting to see how different aides use it. Some refuse to, while others study it. It really is a good barometer for me while interviewing to see how open someone will be.

I once had an agency-sent aide throw a list in my face. Another tore one up.

So a word to the wise to anyone with a new disability- when hiring, make sure the person can take instructions from you without a tude or personalizing the fact that its hands on help which requires one on one communication. Some folks just aren't cut out for this kind of work.

Anonymous said...

I love your blog. Your attitude about life in general is great.

In addition to being a thought-provoking read, you introduced me to pumpkin ice cream. I'd never heard of it until I read about it in one of your (very poignant) posts. So thanks for that small, simple but lovely joy you've given me. :)

Ruth said...

Thanks so much for your lovely comment. Pumpkin ice cream is definitely worth seeking out!

Take care.

Unknown said...

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Ruth said...

Thank you Steve. I'll do that.

Covnitkepr1 said...

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Anonymous said...

Wow. I am continually amazed at how people act. That's stunning.


I am so glad you blog about this.

(And no complaints re: technical difficulties, I've been fighting them here too. Machines happen.)

Ruth said...

thanks so much. followed your blog too.

Jen, machines do happen! LOL