Wednesday, October 24, 2012

One small boy

I went to a track on Oct 13 to try to get around it in less than 20 minutes.  It had been a very long time since I had been back - timing was always just off.  As I started to walk it really seemed so simple - I visualized myself picking up the pace on the final straightaway and through the final turn.  But it was not so simple.  Well, the first half was simple, right until I reached the spot where I thought I would pick up the pace.  Then it got continually more difficult until the end, when I was just focused on each step, and trying to land on my heel with each step.  If I don't land on my heel when wearing the Bioness contraption I wear, then the device turns on in a strange way and I have to just stand until it decides to pause.  If you know me and read this, then when you see me pausing, I probably missed a heel strike and am waiting for the machine to "shut up."

But this post is not so much about all of that.  This post is about 1 little boy.

As I was walking the back stretch, I saw a small wheelchair, and a boy just sitting in the wheelchair.  The lady who must have been his mom was looking at me - not staring with the piercing stare of many, but instead with interest - that I was walking.

I finished and sat - whew!  I had finished!  I broke 20 min - in fact, I walked in 18:55.  So I also broke 19 and in this strange way this is important.  See, in high school, I was getting faster and faster and ran 19:10.  Being that was the beginning of my senior season, I was all set to break 19 minutes.  But that never happened.  I got a strange injury, then woke up one morning with tingly legs just like a year before that, and again the tingly feeling went away after a few weeks.  But I never got faster again.  So I never, ever, broke 19 minutes.  In some really strange way, breaking 19 minutes walking once around a track with a walker makes me feel like I broke that PR.

But this post is not so much about that, except in a round-about way.

When I finished, the woman wheeled her son to me, as another kid of hers had just finished one of those little kid football games.  Someone else had a walker that belonged to the little boy.  The woman just stopped and said to her son in a non-chalant manner, "See, she is walking."

I looked at him.  I make up that his mom would like to see him try to walk more than he must be doing.  And he looked at me with a bit of interest - this woman was walking, then sitting to wheel - she did both, just like him.

So I said "yes, I'm walking.  And it looks like you can walk too.  And you should.  It takes a lot of work.  I've been working on walking around a track for 2 years and it used to take me an hour."  Then I paused, thought, and said, "and I know, it looks really strange.  I might be completely bent over.  But walking is really good for you so you should do it, and work on it."

He looked at me and smiled.  His mom asked him if he could say thank you, "and use your words."  And he said, using words, "thank you."

And then we left.  Always, I have thought how odd it must look that I am out there, walking around a track with a walker.  People must think this is very odd.  Perhaps I should wear a sign that says something like "former runner...  needs time on track."  And I joke about no one else with a walker joining me.

Now I think, this is worth it.  I don't necessarily want to be an inspiration to those who can walk and run and do things I can't.  But maybe that one little boy will think about walking more.  Maybe one day it will be him who will join me on the track and we can race.

On this disability awareness month, there is a theme called "what can YOU do?"  I suppose I can show this little boy that you never know what your body can do until you try.

It's a sentimental story that on some level is completely, well, a bit too much.

But on the other hand, it's not a novel.  It's real.

So for the few people who read this, do you ever wonder what YOU can do with the things you love to do?


Friday, October 19, 2012

A time to consider

This past Wed, we (where I work - the people with disabilities business resource group) had our 5th annual disability awareness dinner.  The first year we put this together, we wondered how we would find enough people to attend and if we could make the dinner happen.  It has grown from that first year of about 80 people to well over 100.  Many different "types" of people come - people with disabilities, family members, friends, supporters of people with disabilities, employees where I work, representatives from businesses who provide support services, and I'm sure I'm missing something.  This year, representatives from at least 30 organizations were there.  Those are the "stats" of the dinner.

This year, for me and some others who have been there for multiple years, it felt like it was the best one.  Why?  That's hard to say.  Nothing changed significantly in terms of our approach to it.  Our organization's leaders showed up for the first time, but that wasn't what gave it this better feel.  People may have different reasons for why, if they are part of the group who thought it was better this year... why they thought so.

I've given thought and think I know, at least in part, why it has been good and was better this year.  It has to do with a general environment that has grown in society.  On Tues, I watched the presidential debate.  I made silly comments on Facebook about the debate, comments which had nothing to do with politics.  This debate seemed about who could attack who better - I started wondering if they might throw punches at some point.  There have been 2 debates and interrupting the moderator, by both candidates, occurs.  Respect for the moderator is tossed out the window.  Neither candidate really answers the questions, but in a method called "pivoting," instead turns their answer into what they want to say.  Then the battle begins about who said or did what in the past, why that was bad, and the debates are about making the other person look as bad as possible.  It's very negative.

The same occurs in Congress.  No matter which party is "in charge," it's all about making the other party look bad.  When I think of all this, it's a display, from "the top" of our country of how we treat each other, which isn't good.  Downstream from that, many people are not happy in jobs - this is true of many people in many companies - and you can read about it.  People are not treated well and there's a negative atmosphere.  How we treat each other is so important.  Someone asked me recently what I would do, as a leader, if I had bad news to deliver to a group.  My answer was that I would start with the good - what is going right - from that I think the bad can be turned - if we see how the good is working and what makes things successful.  I don't get that opportunity much at all, but what I'm suggesting is not done, starting with things like presidential debates, which to me almost grant permission to skip the positive and go straight for the attack.

Our dinner was very different than what I just described.  I think we threw out the negative.  There were no politics there.  It was an atmosphere where people could connect with others if they wanted.  As a lead for this, I didn't get to eat much, but I got to talk to people.  Since people have been coming for multiple years, it feels like connecting with friends.  There was a positive energy where we talked about who was there, who brought materials for people to take home, etc.

Each year we've had a group called Phamaly perform.  This group is the only professional theatre group comprised only of people with disabilities, and it's located in Denver.  Their performance brought both laughter and feeling to the dinner.  Since they have been performing each year, it feels like we are making that connection each year as well.  Their performance this year brought many people to tears for various reasons. 

I talked with one person about the importance of building bridges.  There certainly are problems.  But instead of sticking to a problem, build bridges and that is how we move on.

At the end of the dinner event, I had this really satisfied, almost peaceful feeling.

I should note the dinner almost didn't happen.  There was a question of funding and we weren't sure we could have it at the same place.  But I plugged forward with initial efforts, and the 3 of us who put it together found ways, through very busy and challenging schedules, to make it happen..  Near the dinner, we were all overwhelmed with work, I got sick, and another one was fighting fatigue.  But with all the doubts of getting started and all the obstacles thrown in our paths, that feeling that positive energy made the dinner worth hurdling many obstacles.

I still carry the positive energy with me.  I have been exhausted for 2 days, wanting to sleep but not being able to do so.  The day after the dinner, I had emails of thanks but no one around me was aware of the dinner (well, maybe 1 or 2 people were).  It can be difficult to keep focused on that sense of community, of the positive feelings, of the smiles and hugs from friends, of the praise that it went well, of the comments of our strong leadership which made the dinner happen again.

Approaching new situations, I'd like to think I can use this model of being positive, to change things and bring some things back where they used to be.  That's what I think is needed all over the place.  I would like to find a way to refuse the negative, or to at least find a way to channel it into positive.

To anyone who reads this who was there that night, thanks for helping create a unique environment of positive energy.


Sunday, October 7, 2012


Any month has different themes associated with it.  One of the themes for October is National Disability Employment Awareness Month.  Whenever I hear overall unemployment statistics reported, I tend to go to something called "Table A-6" which gives the employment numbers for people with disabilities alongside those without disabilities, to see if things are getting better.  Note this has nothing to do with politics - it has to do with culture, people with disabilities, and their acceptance into a world that used to separate them completely.

In October, there are efforts at showcasing what people with disabilities can and do offer toward the workforce.  There's a theme out there called "What CAN you do?" to emphasize the abilities of people with disabilities. 

Unemployment statistics tend to be reported for various minority groups, but an exception is people with disabilities.  I wonder how many people know, that of all the minority groups, the "prize" for highest unemployment rate goes to people with disabilities.  People with disabilities not only have the highest unemployment rate, but they have, by far, the lowest participation rate.  What does this mean?

The unemployment rate for people with disabilities in September was 13.5 percent.  For those without disabilities, it was 7.3 percent (note this is different than the 7.8 reported because it took out people with disabilities - I assume).  But we are doing better.  A year ago the rate was 16.1.  This seems easy enough to understand.  But what is the participation rate?

The participation rate is those who are actually engaged in the job market.  So a person with a disability who is not able to work at all is a "non-participant."  But if someone with a disability is actually looking for work, then they are participating.  The participation rate for those without disabilities is almost 70 percent.  The participation rate for people with disabilities is only 21 percent.  One might look at this number and think perhaps most people with disabilities are not able to work.  Sometimes this might be true.  Part of the intent of this month is to change the stereotype of people with disabilities being unable to work.  Part of the intent of the work many people do surrounding people with disabilities is to change cultural perceptions, like the perception they can't work, or the perception that they don't want to advance in their career.

These are some things people have asked me or said, mostly because I have a disability (and I am pretty sure of this because I then watch them interact with others and not ask the same questions).
   - You work?
   - I guess you need something to do.
   - I guess you need some money.
   - How do you ger to work?
   - That's nice that you get out of the house.
   - So, you do typing stuff?
   - Oh, you are going to school.  Are you trying to get your Associates degree then? It would be nice to have something beyond high school.

So if someone just happens upon this post and has no idea who I am, then they should know these statements and questions are annoying.  I actually went back to school for my Masters, to prove, mostly to myself, that I could get a Masters degree.  I want to use my degree as well, and didn't go for it just for fun.  I have nothing against an Associates degree, but I find it annoying that my educational level is assumed.  Yes, I work.  I work full-time, I am married, have a 9 year old daughter, a dog, 2 cats, and a guinea pig.  As a sidenote, our house is a mess - I don't know if it's because of my disability or having too many pets or something else.  I get out of the house other times too!  I am actively part of a church, I drive my daughter seemingly everywhere, and yes, I get out of the house to work, but that's not why I work, nor is that we need the money (we do need money, but doesn't everyone?).  I am also a geek, so I do type, but I have a brain and like to think what I do is utilizing my brain.  Sidenote: I wouldn't win any typing awards - definitely not a strength of mine.

These kinds of stereotypes, for those who have disabilities, are common.  I talk to others and we laugh at the questions we get.  Once employed, people with disabilities can have great careers.  But people with disabilities can struggle with misperceptions of others, to the point that if they lose their job somehow, they may think it is not worth working.  Misperceptions include that a person has a job and therefore, they are set!  Put them in a box and happiness is achieved.  The reality is that people with disabilities want more.  The upcoming generation doesn't necessarily know people may think this way, and they may be in for a shock.  Other wrong perceptions are that because a person has a physical disability, they can't think as well, or if a disease like MS causes some people to have memory problems, people may look for memory problems just because someone has MS.  If you say you can't find your keys and you have MS, people may assume you have memory problems.  Knowing this, I don't misplace keys.  If it does happen at some point  :), I'm not telling. 

This month is a celebration of what people with disabilities CAN do, while at the same time being realistic and spelling out reality, the reality of a culture that used to put people with disabilities on the sideline.  Changes have happened, culture has shifted.  But are we where we want to be yet?  How will we know?

We will know when we can look at companies and see 1 in 5 (the number of people with disabilities) of employees having a disability, and disclosing disability (many with mental disabilities like bipolar or traumatic brain injury do not say they have a disability for fear of stereotyping).  We will also know when we look at leadership and see the same 1 in 5 leaders with disabilities.

We will know when there aren't daily email feeds of 10 lawsuits about companies breaking the law.

We have this month and celebrations behind culture change.  For the upcoming generation, let's hope that culture change continues, so a person is truly not known by their disability, but for what and how much they can bring to the employment world.


Monday, October 1, 2012

Focusing on peace

It was a long, hot summer.  The summer was complicated by a hailstorm which destroyed our roof and other things, an invasion of about 10,000 bees, and a broken water heater.  Fun continues to happen, it seems, with other, more minor things breaking, and at times it can be overwhelming - I just want back in my house, or, I hope I make it back to my house, or I hope I can get in and out of my house.  Although all of this has been happening, I seem to find unexpected diversions, in walking, learning how walking and standing work together in a very complicated way I suppose you might only know if you lost the ability to stand and walk, and then by some miracle got some of it back.

We went to a Labor Day retreat up at a place called Rainbow Trails (Lutheran Camp), in the middle of all the big stuff that was happening in everyday life.  The theme for the weekend was peace, and all I could think, was how the heck can I find any kind of peace in my world right now?  It seems wherever I turn, there isn't peace - there's chaos.  Of course, things could always be worse.  I wasn't in the movie theater shooting in Aurora (though I still felt impacted) and I wasn't in the middle of the fire in Colorado Springs (though I had a friend who was temporarily displaced by it, and that impacted me indirectly) and I have been healthier (though I have a friend who is very sick - see a few entries back).

So where is peace in that?  We were challenged to find or think of a place where we experienced peace.  My daughter found a stream she likes there, and drew a picture of it.  Streams provide a sense of peace for me as well, though I think so much has been happening that such things have mostly left my mind.

At this retreat, we had time where we could choose to do activities, , or we could just do nothing - it really was our weekend.  The camp is at 8500ft and so it's cooler there.  Last year I walked a bunch while I was there.  This year I found the same places where I had walked - one is outside in a covered area where I can walk circles.  With the heat gone, I found myself suddenly stronger, able to not use the brakes on my walker, and to even do complete turns without the brakes - these are types of challenges I create for myself.  Someone asked how much I work out every day.  I don't know - I realized I don't really view doing all this as working out.  The more I thought about it, walking was giving me the sense of peace I couldn't seem to find.

It's opposite what I would think.  I often think of being still, and being still translating into being at peace.  But many times when still, my legs start to jump, so it really isn't peaceful.  Ampyra wants me to keep moving, and somehow that creates peace.  In the mountains, I realized that this walking in circles, where no one bothered me and I could be in my own world, was giving me peace.  There could be noise all around me, but in this new version of walking, I found peace.

Recently I found that my second physical therapist is leaving (the first one left after having a baby).  Right when it seemed I had something going right, the world was once again turned upside down.  Today we met to talk about walking and the things that could help me.  With those things, there is somehow peace.  Perhaps it is in knowing I am continuing to work on things, no matter how out of control the rest of my world feels.

It is in these times that I look to God and find some sense of support that is difficult to explain.  With the whole world around me seeming to be in complete chaos, I find a sense of peace and support that I would never have imagined a few years ago.  If you happen to read this and wonder where your peace is when life is so chaotic, you might find it in some very unexpected place.  I think everyone can find it - but it's a matter of being very aware of everything happening in the middle of a very chaotic world.