Thursday, May 19, 2011

Beyond the walls

I was exiting a building the other day and saw a very diverse group of people... different races/ethnicities, some disabilities... I thought wow, now this is really a neat thing - a bunch of diversity and I'm surrounded by it. Too bad I was late (as usual) to get somewhere.

But before I left someone said, "yes, all these homeless people were just waiting here for their bus and no one knew what to do with them."

They seemed fine to me - much like any other person coming or leaving the building.

Another time, in a different building, I was using my walker and it was too hot and it was a bit too far. Everyone seemed to leave. In this "borderline" part of town, there was a woman, her baby, and a man. They definitely didn't look rich. But they were the ones who helped me get my walker in the car. Everyone else I knew had left.

One last example - I left an appointment. I was the last of the day, it was at least 85 degrees, and it was the end of the day. The people I saw at the appointment were still inside the building. A lady got off a bus and helped me with my wheelchair. Again, definitely not rich.

Inside many church walls there are food drives. I bring food, someone gives the food out to people, or the church may donate food. Certainly some people volunteer to serve meals or volunteer for Habitat for Humanity. They may go on mission trips to help people and they may be briefly immersed in that culture.

But what I wonder is, what happens in day-to-day life? Maybe I'm biased/naive and think the people in general, in my church, would embrace diversity rather than make snide comments about people who may, or may not be, homeless. Maybe the people I saw the other day weren't homeless but just didn't have much money. But I know some of the people who make comments and judge a bit - I know these people go to church.

Do they keep their giving inside the walls of church? Do they think they've done their bit by giving a couple cans?

I bet there are times when I also judge. But wouldn't it be neat if we took what we do inside the church walls and applied it to day-to-day life? I think we'd realize there is a lot of beauty out there.

Those people waiting for a bus? They were actually invited to the building to give their input on something. I doubt they were all homeless, but does that matter?


Sunday, May 15, 2011


MS Walk/Roll/Combo recap, in a way...

Family and friends who came - they are the best.

How strange is to bring the walker in addition to having the wheelchair?

And there was the Ampyra tent - it was swamped - the place to be.
That was exciting.
Telling a person working what a wonder it has been - all the positive things.

And he said...
"Does it help your stamina?"

Yes, that's it - stamina!
I walk better, faster - everything is different now.
That's pretty amazing, faster, better, keeping going because

Most days I don't feel like eating until about 4pm.
I have trouble sleeping - I have bad leg spasms.

The stress of the last month has been incredible
and I have to keep it to myself
but it has hurt.

It would normally cause an MS attack,
as continually be "slammed to the floor"
by various things which I can't control
does that.

I've had the pre-attack fatigue where I go to bed early.
But Ampyra kicks in for my legs
and I wake up to a new day.

I can walk further,
I can withstand the insomnia.

But mostly, I have the stamina to somehow take the
boom, boom, boom nature of life, from everywhere
pop a pill, and I'm back.

It's been 11 months since an attack.
On that beautiful day, slightly cool, bright sun,
surrounded by family, friends, and all the others who were there.

We came together as community.
It's beautiful.
I wish this beauty could be transferred.


Monday, May 9, 2011


I was taking a diversity class last week - supposed to be an overview while at the same time going deep, all within 4 hours.

We introduced ourselves and told a memorable experience related to diversity. We talked about things like some people are ok standing close to people while other people are not; some people are "touchy-feely" while others are not.

We were told about the different stages of being "culturally competent." In the middle is this stage called minimization. That's when you take someone of one type of diversity and make comparisons, so supposedly you are minimizing their diversity. I find that interesting - it's as if we want to leave people in their categories. On the other hand I suppose if someone told me they know what it's like to be in a wheelchair because they spent a week in one then yes, that's minimizing it.

We did an exercise where we watched a well known video from the late 60s where the teacher split the class into blue eyed kids and brown eyed kids. Then one group was treated badly for a day and the next day they switched. Then you are supposed to see how behavior changes and how people can act.

Then we got to the section on white privilege. There was a paper with 30 questions like whether you had to worry when pulled over because of a person's race. On that questionnaire, some questions didn't specify race, so maybe I felt different due to disability. Then we started discussing and I pointed out that while someone of a certain race might feel uncomfortable in a given situation, so might I, because of disability, which is isolating. I was told that we couldn't discuss this because we were talking about white privilege. I suppose I was minimizing things. But the problem as I see it is, we never talked about disability and how that changes things. And a big difference is, after I go to a place and feel different, I go home and though I love my family, they don't have disabilities. Is that a double whammy?

We ended with a brief exercise where we did get to talk about how people with disabilities have things they might not have elsewhere. What?!! Ummmm.. But we were in small groups by then (other small groups talked about other diverse groups), and no one in the group talking about disability had a disability. So they came up with accessible parking spots being present and one other thing I forget. Both of these are required by law - definitely not extras. I think that's minimization.

But go back to comparisons. I don't know what it's like to be a different race. But I do know that disability crosses race and other things. When we did the MS Walk on Saturday this was quite clear. Beautiful day. Wonderful family and friends. Community - all fighting the same thing.

But back to a harsh reality. Disability is most often very unique. I'm the only one in my house who has MS. No matter how much I am loved, no matter how much support I have, it's still MS. At the end of the day, when I go to bed, I'm alone with it. And there is where God can be found.


Sunday, May 1, 2011


Kenyon College has something called an honor code. The honor code is important - it means that you are on your honor to be honest. This seems so simple. It allows a professor to leave while students take exams, or for professors to send take-home exams where students do not discuss the exams with each other. I'm sure a few abuse it, but I wasn't one. Having this system develops trust at many levels. Students tell the truth; faculty tell the truth.

In society, we don't have this trust in so many places - in fact, we have a lack of trust. It can be complex and throw a person off if they are used to the honor code - trust model. Tied into this, in some manner, is difference. Where there is difference there can be discrimination. Discrimination creates a lack of trust. Lack of trust then grows - from those discriminating (whether they know it or not) to those discriminated against. This is a complicated sense of dynamics. I'm going to throw into the mix "parallel worlds." So with discrimination, lack of trust, and parallel worlds, this is a strange blog and let's see how it goes. I know people may not agree with it or understand it, but it's reality to me.

Obama's birth certificate - please don't moan. Keep reading... I know we've all heard too much of it, from whatever point of view you have. Here comes my point of view. No other president has had to provide so much proof. Of course we all provide birth certificates. But nothing has ever been good enough for Obama's. I think the long form, recently submitted, was the fourth or fifth piece of evidence. And I've already received 2 emails on how it isn't good enough either and of course someone altered it, to. Nothing will ever be good enough. No matter how much proof there is, it's never good enough and it's like starting over. And that, to me, is discrimination - proving oneself over and over and over and over ... and having to start again and go through the same process, when others don't have to do the same.

I'm not Obama by any means, but I know about this continual proving of oneself and it never being good enough. I don't have to prove my birth certificate. I have to prove other things. Despite how many people tell me how inspirational I am, I am still proving. It happens again and again and again, in multiple areas of life (not all, but multiple). I follow the instructions of everyone - A through Z - but it seems my A through Z is not 26 steps. There's an A1, a B1 - it depends on what it is but there are always extra steps. And it's never good enough - like the submission of Obama's long form, somehow I may have to go back to step 1. To me, again, this is discrimination. Discrimination is having to continually prove oneself, again and again, when others don't have to do the same thing.

I have been told that when some people learn to drive, part of learning is knowing they may be pulled over because of their race, and they must be ready for what to do when this happens. I worry if I am pulled over that the hand controls will put me in a questionable status - can she drive. If there's an accident, what happens? Who is to blame? Accidents frighten me in a different way than others.

And so we get to trust. Knowing I have to prove myself again and again, in many different areas of life, and that it often doesn't seem to matter, my trust level is pretty low. The fact that others do not trust all the proof given leads me to think they have no trust. This occurs for different categories - that word I hate - of people.

The question is how to get past this. We have so much legislation. So much training is provided. Because of this, many people think everything is fine and that there are no problems.

To really get past this, there has to be a culture shift. Trust has to change, for everyone.

I'm sure Kenyon isn't perfect, but it's something. So I'm back at Kenyon. I'm not sure how to define the culture there, but it seems to work better. So there must be something I'm missing.

In the meantime, I'll keep trying to prove myself. I know the majority of people who read this will probably be surprised at this (that I am continually proving myself all over the place in my life and getting nowhere with it), but the ones reading this know me and aren't the people wanting proof. That means there is hope that proof will get through to others someday.