Changing the World One Conversation at a Time

I like this campaign. I have heard from tons of folks that I should just get a sense of humor, that it doesn't matter, that it won't make a difference, etc, but I like it.

First of all, it's assertive. When my son was little and having trouble with some kids I ended up telling him one day not to cry around mean people. I told him I didn't know why, but crying makes mean people meaner.

It should not be true. I hate that it's true.

But trust me. It is.

Well, throwing your wishes up against those who are enjoying their power has the same effect. Wishing people would just be nice to us and educating the heck out of them to support that wish just makes the bullies enjoy their power more. In the article I linked to yesterday Maggie Hoffmann said "Gratitude is not a viable advocacy strategy." Well neither is wishing.

I am delighted that the disability community is finally standing up and saying "STOP IT!"

Secondly, I have had my own ideas about culture change for a long time which I will write a LONG post on at some point, but let me share this image:

Picture that year in Sunday school (or school, or scouts or wherever!) where that naughty kid ran the show. The teacher or leader tried and tried to get control, but just couldn't.

How'd they do it? How did that naughty kid take the lead?

When I explain this to new charge nurses I call it the Michelangelo Method. (Yes, I made it up, but giving it a name adds credibility, don'tcha think?)

There is a story that someone asked Michelangelo how he sculpted his masterpiece, David. Michelangelo thought for a moment and then told the person that he had the vision that David was in the stone and he just cut away everything that wasn't him.

Well, that's just what that naughty kid did:

*He made a vision--of mayhem where nothing serious got done.

*Then he cut away what did not belong in his vision--by responding every time things got off track (by making fun, threats, or other general naughtiness.)

*And thus, that naughty kid became the leader--no matter who was actually supposed to be in charge.

There are a huge number of possible visions in the world, and there are a wide variety of 'cutting away' tools, some acceptable and some not. But that naughty kid enacted what I consider to be the first step of leadership.

The Spread the Word to End the Word campaign has a vision of respect and they are using the tools of education, media, and more to respond every time and cut away what does not belong in that vision.

They are leading.

And we can help.

Click the pic above to sign the pledge, sign your group up as supporters, get a shirt and join the fun! It's not too late, you have almost a week!

Xenagogue--Disability Leadership That Works

I am just going to admit it, the letter x stinks as a writing prompt! I learned this word from my favorite (nearly) daily read, the blog 37 days by Patti Digh.

Xenagogue is an excellent word though—it means guide. This mode of leadership is one of the biggest strengths of the disability movement.

Throughout my daughter’s life it has been the parents of other children with disabilities and my friends with disabilities that have showed me the ropes—in so many ways.

The day after we got home from the hospital with our new little baby I placed a call to the National Down Syndrome Society. It was a mom that answered that phonecall and gave me the number of my local organization.

I then called our local group and it was a dad whose first word to me was “Congratulations!” (a lesson in itself!) By the end of our conversation he had given me the schedule for upcoming meetings, had asked if my daughter had been seen by cardiology yet, and had asked if I had been in contact with the folks in our county who administered Early Intervention. That call, that dad set us on the path we are still on today.

Parents taught me about Down syndrome, about which programs in town were good and which books I should read next. Parents taught me about the laws and advocacy skills I would need to help my daughter succeed. Parents and friends who have disabilities asked—and continue to ask—the questions that keep me and my family growing and learning.

Parents and self-advocates teach each other to access systems, find supports and develop creative ideas.

Few other folks understand the truly individualized nature of the lives we live. Systems often attempt to ‘bulk’ our kids, trying to assign our kids’ supports based on the system’s capacities or values, rather than on the reality of the individual child’s own circumstances.

Systems often try to implement a “Down syndrome plan” or an “autism plan” for example.

Parents, on the other hand, understand that Down syndrome (and any other diagnosis) has a group of symptoms, and that those symptoms play out differently in each person. While data received from the experiences of others contributes to building each child’s plan, so does the needs, strengths and situation of the actual child.

As a nurse I was prepared by my training for this.

I know many things about appendectomies, for example. I know about incisions, medications, complications, lab results, pulmonary hygiene etc. I must incorporate all of these things in the plan of care for a person who has had an appendectomy. Yet every care plan I make will be different because I must also adjust my plan according to the actual situation of my own patient.

If my patient is very old or very young, has heart disease or diabetes, is pregnant or is HIV positive, has a supportive family or no family at all, or any of a thousand other possible variables, my data-driven plan must be adjusted to be effective. Applying scientific knowledge in an individualized manner is what nurses do.

In the disability world it is usually parents and self-advocates that make this individualizing happen.

Self-advocates and parents “get it.”

We are great at talking to each other.

In a much lesser way parents and people with disabilities reach out to people who do not have disabilities to share the disability experience with them. When we take the role of guide with folks beyond the disability movement understanding grows.

Last weekend in Washington I went out to dinner with a bunch of people, with and without mobility disabilities. As our friends’ guided us from elevator to elevator through the subway system of DC we all learned lessons about accessibility that will be food for thought for a long time.

On a larger scale laws like IDEA and the ADA exist because people with disabilities and parents worked as guides with lawmakers to build recognition of the disability experience.

While the role of the superhero in disability leadership gets overplayed, the role of xenagogue has room to grow!

Waiting for a Hero--Disability and Leadership

Back a few years ago I attended a rally for IDEA in Washington, DC. It was a big deal—a roadtrip to meet advocates from around the country and visit with our legislators.

While I was there I had a conversation with a group of fellow parents of children with disabilities. In the course of our conversation one woman said, “What the disability movement really needs is a hero.”

I didn’t think too much about it when she said it, but since then I have developed a real opinion.

I was in Washington this week for the Disability Policy Seminar. I spent Sunday and Monday learning tons of information about the laws that affect people with disabilities and I was in a room full of heroes: self-advocates, advocates, professionals, and parents, lobbyists and grass-roots leaders from around the country—all of whom work tirelessly to build success for people with disabilities. And for everyone who was here there are hundreds more back in our home towns also doing this good work.

I think though that my friend wanted a super-hero. Someone to fly in and rescue us (preferably someone with a snappy costume, special effects and a memorable soundtrack!)

And with this I cannot agree.

I have seen the ‘rescuer’ model of advocacy many times and I do not trust it.

It usually goes something like this: A group of concerned people will gather to discuss a pressing need and one person steps up and says (booming voice optional), “I will take care of it!!!!”

They leave the room, work ‘behind the scenes’ on the issue and at the next meeting stand up and say, “Problem solved!!!”

Sounds great, who wouldn’t want that?

Me.

Naturally.

Have you seen the movie Superman Returns?

Superman, after many years of being THE ANSWER for the people of Metropolis, left the galaxy for a long sabbatical on Krypton. Without him, Metropolis fell apart.

It seems that people had stopped learning to swim because they knew they would be rescued. The city didn’t focus on crime-reduction because they didn’t have to. Kids didn’t know to tie their balloons to their wrists…. Mobsters ran amuck… Kittens went willy-nilly up trees…

It was a mess!

My friend had the real-life equivalent of this happen in her school district. They felt lucky because they had an administrator who provided extraordinary support for their special ed parent group. In September this administrator retired to South Carolina—she might as well be on Krypton! Without her they've found that their group has no mechanism to get anything done.

They do not have relationships with anyone else in their district, they have no working knowledge of district processes, and there is no replacement hero stepping up to help them.

They are in a tough spot they didn’t foresee. Because they were successful they believed they were empowered. They were not. They were dependent all along.

A rescue may be just what you need sometimes, but it is not leadership

You may want to ask yourself how your own situations measure up. Are you or your organization overly dependent on a superhero? What can you do to empower yourselves? You want to succeed WITH your superhero, not have them succeed for you.

Another popular myth in the Developmental Disability world is that leadership is done by people who have “arrived” at some magical point. Parents promise to attempt leadership when their kids are older, professionals say they will lead when their careers are established (or once they have retired.)

Sounds reasonable.

Who could object to this?

Guess who!

Me.

Surprise, surprise!

Leadership = Influence.

People who do not develop a habit of influence will NOT suddenly become leaders at some point down the road.

Part of our problem is that we have a tendency toward all or nothing thinking. Somehow we believe that if we can’t run for president we can’t do anything at all.

The truth is that leadership is a spectrum and there are multitudes of small, medium and large actions that any person can make to influence the people and situations around them.

The picture above is a group of LEND Trainees who attended the Disability Policy Seminar. Together we learned about the policies that affect people with disabilities. On Tuesday many of us went to Capitol Hill to enlist our legislators’ support.

The issues that people with disabilities face in 2008 loom large. The good news is: everyone can make a difference.

To see really good summaries of the disability-related bills that will be before congress this year click HERE.

To read an excellent essay about taking a stand (not specifically about disability issues but absolutely applicable) click HERE.