Riding Along

Marty has used a wheel chair for eight years.  Seeing “our” wheelchair for the first time was a surreal experience.  It sort of punctuated the strokes; the chair clarified the sea change in our lives.  I can remember looking at it and thinking how in the hell could this piece of equipment be a part of our lives.

Well, it was, it is, an everyday part, an integral part of our life.  It is the only way for Marty to move about, to be in different places and to see different things.  It is both the symbol of her freedom and her disabilities.

Using and being with someone in a wheelchair requires learning, it requires learning by doing, we have learned.  We have learned some doors are easier than others, doors with breeze ways and then another door, especially if you have to do a 90 degree turn suck.  Some places are better to go to than others, Chili’s is not good, Applebee’s on the other hand is great.  

Some people deal with the chair better than others.  Some seem to be afraid of the chair; some treat it like another piece of furniture.  The Grand-kids are often fascinated by it.   

There are definitely better ways to be with people in rolling chairs than others.  Here are five real tips for being with the wheelchair set from the mouth of my bride who rides:

When you are talking to someone confined to a wheelchair, sit down.  In most cases the person in the chair can’t get up to look you in our eye and you end up looking down on the person in the chair….and they zone out on whatever is in your nose.

Eye level, looking at someone in the eyes is a big deal.  Constantly looking up to the see faces and eyes of the people around you is tiresome and frankly a bit intimidating.  Think about it, you are sitting in a room of standing people, you feel out of place, you are literally looked down upon……try sitting and make eye contact with the people who are forced to sit.  

Don’t invade their space either.  Marty is stuck in her wheelchair and can’t really move it around when people get too close.  Nobody wants to get backed into a corner with no place to go.  Anyone cornered gets anxious.  If you close in on someone who can’t get away, someone who can’t protect their personal space, the person in the chair likely is not enjoying your company and they are likely thinking, “Hey, you with the breath, get out of my face.”  

I hear that from Marty all of the time, she probably won’t say that to you but you never know.

Try to sit in front of Marty so she can see you and make eye contact.  Her hearing hasn’t been any good since the 90’s (too much rock and roll) and she will communicate better with you and follow you better if she can see your face.  We all need non-verbal cues, people in wheel chairs do too and often, as is the case with Marty, she can’t really turn all the way to her side.  Sit where she can see you and you can see her face, that way when you make her smile by your very presence and witty retorts you will see her smile.  It’s very cool.

Ask if you are going to move the wheel chair.  If I do it or if one of her regular caregivers moves her we try to tell her in advance.  If you need to reposition her or any other wheel chair bound person, ask.  Marty will probably not say no but you never know.  Asking gives her the option and gives control to someone who craves but lacks real control over where she sits.

Then there is the hug….how do you hug someone in a wheel chair.  Obviously, the first thing is you ask.  You can do the side hug, wrap an arm around the shoulder and bend down, touch cheeks and do the old Hollywood kiss thing, smack, smack.  This is probably easiest.

Me, I like to stand at the front, straddle Marty’s legs and wrap both arms around her, but I like a good hug every now and then and I assume everyone else does too.  The big thing is a little touching every now and then does a body good….but gently.

It’s really kind of interesting how quickly Marty’s wheelchair has become fundamental part of our normal….it is always there.  It’s one of those things you grow to hate because of what it represents.   

It’s one of those things you grow to appreciate because of its functionality and simplicity.  I wish we didn’t need it.