Saturday, May 26, 2012

Journeys and speeches

Last week, I spoke to the "big WIGS" at our organization. Just 3 minutes about our People with Disabilities Business Resource Group. Other groups gave 3 minute talks as well - African American, Latino, Pride (LGBT...), Veterans... While I thought my 3 minutes (in which we were told we could only be positive) was succesful, I thought the bigger part of the evening, might have been the journey to get there.

I met with 2 people to figure out how I would get there because getting anywhere new is always a new adventure. "It's easy - you just cross the street from the parking garage and it's right there. Then the elevator is right at the entrance, you go up, and the reception is right there." Uh huh. Right. Show me. This is the Denver Art Museum and it's downtown, and downtown is never easy for me. In reality, it was just a block and a half, then cross the street........ and for someone like me, the difference between crossing the street and adding a block and a half is a big deal if I'm going to use my walker, which I was.

"Well, there's a drop off spot right by the entrance. Stop there, call me, and I'll come park your car." Right. So I drove there. The museum is actually in a large area. There's not really a drop off spot. Well, there is, but the curb cut isn't there. The curb cut is down the street a bit. I parked there and should have brought my camera to take pictures of the looks I got. Someone came out - not the right person - the person who was pregnant with a bad back. Right. On the 2nd try, 2 people who were not pregnant and did not have a bad back helped. Excellent. Someone parked my car and I walked in.

Even from there it was a pretty far way to get inside. But I made it, just in time for the speeches to begin.

I heard... we are awesome. 43% of our workforce is of color and 75% of our workforce is women. Our founder said it was ok for a person of color to share a hospital room with a white person, and this was way before that was considered ok. (Our founder's son had MS - that was not said). On and on and on and on ... everything but disability, pride, and veterans. Then we each got to talk. Here's my abbreviated talk, which I modified a bit after hearing percentages of other races.

"The rate of disability in the US is about 20%. Unfortunately that will probably go up because baby boomers are aging and we have the obesity epidemic, and obesity lends itself to disability.

Our resource group has 3 Co-Chairs (introduced them). Our group is small, but our members have a lot of passion behind them. I would like to highlight 3 things we do.

First, we have our "Spice of Life" dinner which we have had each October for 3 years. It started as a pilot but grew quickly. Last year we had to limit the number of people from each organization who come. We have people from organizations who work with people with disabilities, people with disabilities, employees who work with people with disabilities, and members of our resource group. We are told no one else does this. It's a place for people to form linkages, the only place people really see each other face to face. Since we're told no one else does this, we're pretty sure our competition doesn't do this. And the businesses who are there - many are our employer groups, so this is good visibility.

The second thing we have is our "Thrive" accessible activity which we have had for 4 years. We know we emphasize health and wellness. We know we emphasize walking. So we make sure we have an accessible activity that shows we model health and wellness for people with disabilities as well. We've done an accessible ropes course in the mountains, an accessible hike in the mountains, and this past year we met at Garden of the Gods. This showcasea our inclusion to the community.

Lastly, we are a voice at the table for our membership ADA outreach committee. We identify gaps in the system. We know we have wheelchair scales - do we use them? We know we have lower exam tables. Are people with disabilities put in rooms with these? We get calls from members and can have those concerns addressed.

Thank you for your time and we hope our events will continue. We hope you will be especially aware of our dinner."

Whew. Done. Soon it was time to go. Getting out was much easier since we knew where my car was parked. The journey was almost complete.

I pulled away from the museum and noticed the homeless parked on the lawn by the capital for the night. They each have their own journey.

The next day I heard of the great, beautiful location with the great view and we should not forget about this for other times.

I won't forget. It was quite a journey. Most things I do are, and people see pieces of those journeys but not the whole thing.

I hope people with disabilities don't continue to be invisible in the world of diversity. There is so much work to do. Our group is so small because people don't disclose disability for fear of losing their job. Even if they have a known disability, they hold back discussing it for the same fear. A fear is being one of the ones camped out in the park, as so many people who have disabilities are homeless. But that is another topic, for another post.


Saturday, May 19, 2012


Thank you - 2 simple words. But each donation to the MS Society for the MS Walk means so much. It all added into over $4,000, which is my highest total ever. "Thank you" doesn't seem enough.

For all the donations raised by myself and others over the years, so much has occurred. There were the "ABC" drugs as the first drugs to slow the progression of MS. After those came new drugs, targeting different things, carrying bigger risks, but being more effective at slowing MS than the "ABC" drugs. Recently Ampyra entered the scene as the "walking drug," and the only drug that has really worked for me.

Alongside these drugs have been advancements in technology. Leg braces, called AFOs, have changed over the years. And most recently, there is the Bioness, a robotic type of device triggering nerves and muscles in the legs.

The MS Society also provides programs, services, and grants for people with MS. They helped me get grants for a Bioness. They address employment.

There is much to do. There won't be real satisfaction until there is a cure and/or a vaccine. At the walk, I saw a friend, diagnosed way after me, who is a quadriplegic. We drastically need medicines to cure MS at its onset. One never knows what direction MS will take. We need a vaccine so no one has to hear the words "you have MS."

And there needs to be education to aid those living with MS now. People need to know the effects of heat. They need to do more than just stating they understand. Read. Listen. People need to know that for some, 1 minute of heat, sun, and humidity may make a person with MS temporarily into spaghetti. And people need to know that the symptoms that come and go are not fake and are not used to make excuses. They are real. 1 minute with MS a person is fine; the next minute the person is wondering what train hit them and what to do about it. 1 minute I am fine and sit down; when I stand to get up, things may change - adaptation at every moment of every day. That is not understood by everyone - some people "get it," some people don't and never will, and some people say they "get it," but don't and never will.

But thanks to so many, we are getting there. New research, help for those living with MS, and education. "Step" by "step."

And for me, God there along every "step" of this "adventure," where I am fortunate and cannot fully express my gratitude to friends and family who support me, who "get it," on a minute by minute, day by day, year by year, lifetime basis. Thank you.

(And the thank you photo cards are printed and on the way :) )