Wednesday, March 6, 2019

Consider this an awareness post.

March is World Cerebral Palsy Awareness Month. You know the drill. I try to educate every single day here and on every social media platform I can find. Before social media was a thing, I worked like a crazy woman to send a Christmas card every single year that made the world a little more aware of what CP is and looks like. It is just who I am -- I want to make the world more aware, more sensitive, more user-friendly for the people I love. You can click on Cerebral Palsy in my sidebar under the list of "Specific Blessings" and find no fewer than 50 posts. There are more than 200 under "Special Needs Parenting". I desperately want you to be aware.

And yet.

Yet, I have started and stopped my CP Awareness post for this month several times already. I know what I want to say but the words are trapped in my head and keep escaping as tears instead. (I hate when that happens....but let's go on and just file it under Special Needs Parenting.)

We have planned a little mini-Spring Break trip to Chicago next week. Wade has to be there for work, so the kids and I thought we would join him -- you know, show Cate the place of the triplets' birth and eat lots of pizza!

But our Benjamin has decided that after the fiasco in January with Southwest Airlines and his wheelchair (Did you read this?), he doesn't want to make the trip. He knows that he is in a crazy busy season as he finishes his senior year of college and graduates and he is afraid to risk the airlines destroying his wheelchair, again. He prefers to stay home with his attendants and forgo family fun because he simply doesn't have time for the repairs AGAIN (we JUST finished them from the January trip last week!).

Dad and boys at Wrigley Field!

Outside our apartment in Chicago!

I am so sad. Heartbroken, really. I love nothing as much as having my family together making memories. But I hear Benjamin's heart and I am committing to support him. And so the flip side of being heartbroken, is being angry. And I am just so mad that all of the awareness posts, all of the education talks, all of the social media everythings haven't made a dent in how people with Cerebral Palsy face the day to day. I am just weary and teary and sad and mad. 

We love to travel. Love it. But until the airlines commit to making it better....Benjamin will think long and hard about a trip before committing. He will miss out on so much and yet, I can't blame him.

Last week a UPS truck was parked in the accessible loading zone between two accessible parking spaces. As the driver walked past me, I asked him to not park there in the future. I explained why. He rolled his eyes. He pointed to the ramp and assured me that he didn't block it. I took a deep breath and explained how Benjamin could not use the ramp at all if he couldn't exit the van. And he couldn't exit the van because the UPS driver was parked in the accessible loading zone -- in the striped DO NOT PARK HERE zone. He scowled at me and climbed in his truck with a "Call and complain then."

So I tweeted. UPS followed-up almost immediately and asked for details. I sent them. Then they sent this:

And I was flabbergasted and so responded with this:

And it has been crickets ever since. They documented it. They never said it wouldn't happen again. They didn't say they would educate their drivers. NOTHING.

And so here I am yelling that we need awareness. I am begging for a chance to offer my wisdom. I can speak at a Southwest team meeting. I can write an article for the UPS employee newsletter. I can consult or advise or help in any way.

But I fear these corporations do not care. They have customers who aren't affected/angered by the fact that they damage the wheelchair every time a person like Benjamin flies. They have customers who are not harmed when they can not exit their vehicle because the easiest place for the UPS truck to park is the Accessible Loading Zone. And so they just don't care.

Mason and Benjamin serve on numerous accessibility awareness groups and they have called me frustrated many times. Mason sums it up best:

"Cerebral Palsy isn't sexy."

It doesn't get the attention other marginalized populations generate. UPS driver legitimately did not care. The airlines -- Southwest is only the most recent to damage the chair -- do not care.

The bottom line is that until someone in power is affected by Cerebral palsy  -- or any physical disability -- there is little hope that they will change.

And yet we roll on. We roll. We march. We will crawl if we have to. In an effort to keep fighting this fight -- keep educating the masses. 

Cerebral Palsy is not the biggest barrier my boys have to overcome. Absolute indifference from the society in which we live is far far bigger.

It is so past time for that to change.

Carol - The Blessings Counter