More on the R-Word

You may already know that Sen. Michulski introduced legislation to ensure that future federal legislation uses person first language a couple of weeks ago.

What you may not know is that this story has been playing out in my region as well. This summer one of our county legislators was recorded calling another an 'r-word' during a roll call vote.

Nice, huh?

In early August there was a cross-disability press conference and a protest at a meeting of the County Legislature where I spoke. Here is what I said:

Recently someone in this chamber was recorded using the r-word... and sadly, no one was recorded saying, "Hey, we don't use that word here!"

There is no minority who would accept this sort of disrespect, and the disability community should not have to either.

It was a mistake, I know. And before my daughter was born with Down syndrome I can't say that I "got" disability either. My life experience has taught me a lot.

Fortunately you do not have to wait for life to gift you with disability for you to become aware and respectful of disability issues.

There are many ways you can learn about disability and many actions you can take to improve yours and our community's awareness:

*You can seek training from any of the many agencies that support people with disabilities in our area.

*You can support agencies and people with disabilities personally and through legislation.

*Most of all, you can get to know people with disabilities. Without them your knowledge of the strengths and needs of our community is incomplete.

If you follow these steps a mistake like this will never happen here again, and the disability community and those that love them will thank you.

In closing I would like to quote Eunice Kennedy Shriver who founded Special Olympics and died yesterday. These are the kinds of words we want to hear from our leadership about disability:

"You are the stars and the world is watching you.

By your presence you send a message to every village, every city, every nation.

A message of hope.

A message of victory.

The right to play on any playing field? You have earned it.

The right to study in any school? You have earned it.

The right to hold a job? You have earned it.

The right to be ANYONE's neighbor? You have earned it!"

Thank you.

This week the Monroe County Legislature is slated to introduce Person First Language Legislation stating that future legislation will be crafted using person-first language. I wasn't able to be there last night and I don't know what happened.

I'll let you know how that goes!

(The video is a bit long, but really worth watching!)

Bits and Pieces

To start with, a funny story: Jenn was looking at a doll the other day. It had kind of a thick body and a screw that held it together right in the middle of the abdomen so my daughter thought there must be batteries and asked me how to make the doll talk. I looked the doll over and it didn't have batteries after all and I said she wasn't a talking doll.

Later I heard her tell her sister about the doll. She said "That doll doesn't talk. We need to get her a dynavox!"

(FYI: a dynavox is a voice-output communication device. Several of Jenn's friends use them.)

New York Times: Gary Presley, author of 7 Wheelchairs, blogger and FB friend had this essay in the New York Times last week!

Disturbing Fact: New York has over 6000 people on its waiting list for adult services. Check out your own state's statistics and sign the end-the-waitlist petition.

New blog: Check out this new blog by Penny Green. She is a mom. Sadly, her son with Down syndrome died 20 years ago from heart complications. She is from the UK, and an activist for folks with Down syndrome--especially those with heart issues. Stop by--and like all of us, she loves comments!

Finally: What do you make of this?

The picture is of my daughter wearing paper sunglasses--don't know why... Funny, my sister-in-law didn't send me the pics of her wearing them... :)

Teaming for Success

OK, I'll admit it. When I take my car to the shop I have a brief conversation (what's wrong?), leave the keys and head home. And when I go to pick it up I ask almost no questions, nod a lot at whatever they tell me, pay and leave.

I know very little about cars, expect the professionals just to 'do their job,' and I'm out of there!

My husband, on the other hand, has made it his business to know a lot about cars. He chats with the mechanics before, during and after any work. He discusses products and possibilities and knows exactly how the decisions made in the shop should play out on the road.

He listens, he learns and fits all the advice and information he gets from the car mechanics to figure out what to do for which car, and when to do it as well as which cars to keep and which to replace. He incorporates all of what he learns into an overarching transportation plan that he has in mind.

And who do you think gets better service from the mechanics?

Me with the 'dump and run?'

Or my husband who makes every mechanic part of his car care team?

My husband. Hands down.

Because I throw money at car problems where he builds a relationship and a team...

Teaming up with various professionals and experts is an incredibly useful skill for parents of kids with disabilities and people with disabilities to learn. It's an approach that allows people to make full use of the expertise and skills of others within their own plan and vision for their life.

Teaming makes the professionals you work with more effective as well.

For example, your child's OT will be much more successful if they hear from you that her hand movements are attempted signs, not "random, bilateral waving movements, possibly for stimulation." (Yeah, she was signing 'milk.' She was thirsty.)

And, your physician will be able to do more for you if you DISCUSS the medications you don't intend to take with him. Rather than just not taking them. (Yes, I am talking to YOU!)

Teaming, done well, is a good approach whether you are working on health, educational, transportation, legal, community participation, employment or some other issues.

Tips for successful teamwork:

* Engage and stay engaged. You are the team leader and you "hold the vision," do not let go of this. Set the tone of teamwork from the beginning. Give input, strategize with people and participate in carrying out the plan. Do not disengage, and do not sabotage the plan. When things aren't working, tell the team first to allow for revision.

* Communicate openly. Add your meaning to discussions, give more or new information, keep people oriented on your overall vision, disagree--respectfully and without anger.

* Recognize and set boundaries. Everyone working with you is a team member, but not every team member needs to attend formal meetings--in fact, many can't or won't. This is fine. People's association with you can be enough to create teaming. Respect people's time and understand that some associations are time-limited or situation-limited. (For example, the car mechanic is only 'on the team' when the car needs service--and only my husband will talk to him/her... ever!)

* Respect each person's expertise. Let them do their job WHILE contributing your own info. Respect your own expertise as well. Expect to contribute.

* Diversify your team. New ideas, possibilities and perspective come from NEW people. (Read Never Eat Alone by networking guru Keith Ferrazzi to learn more about this! Chapter 11) Diversifying should be a thoughtful process, but it is necessary. You already know and have access to the resources of your closest friends and family. Grow to grow.

What other tips do you know?

Picture from here.