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.

Questions--Proposed Medicaid Cuts

Have you seen the proposed Medicaid cuts? Do you notice that these cuts only affect the sickest and neediest people in the country and their caregivers?

Do you notice that the things being cut are necessary items—in other words, when Medicaid stops paying for these things someone else will have to? Do you realize that this sort of shell game—shuffling who pays for a something essential—makes agencies look good, but actually saves taxpayers nothing? (What difference does it make to the taxpayer if their federal taxes go down $5 and their state taxes go up $5???)

And do you notice that these cuts position people with disabilities as the enemy of the budget? These are not proposals to cut waste, manage budgets and eliminate fraud, these are proposals to cut care. The agency has nothing to lose. If we can’t gather the support to overturn the changes the only people who will suffer are a nearly invisible minority, and if we can muster the support any higher costs can be blamed on us… Lovely.

If these cuts go through care issues for people with disabilities will be elevated from a national struggle to a national crisis. Private insurers certainly will not pick up the difference. This could well create the demand for Universal Healthcare…do you think that’s the intent?

Are we going to be overwhelmed or build an opportunity?

Where can we start?

First read this article.

It is not a bad one, honest! The first page is an introduction, on page 2 is a really easy to read chart about all 6 of the proposed cuts. That is followed by a discussion of each of the cuts that tells what we had before, what the cut is and what the impact of the cut will be. After that is the appendix with supporting data.

Just pick the issue or two from the chart that matter to you and read the narrative on those if you want.

Next choose your level of involvement:

If you just want to dip your toe into this issue pick the one or two cuts that upset you the most and call your legislator’s office and tell them your thoughts. (The person who answers the phone may speak to you, or they may have you speak to a staff person who knows about the issue—either is fine. They will ask for your name and address to confirm that you are in their district.) The whole thing will take 15 minutes at the most.

Good job!

If you want to wade a little deeper make the call as above and write your concerns into a letter. Make your letter personal—show why these cuts will harm you or your child and include a picture of yourself or your child in it (imbedded/printed right on the letter is best.) E-mail it to your legislators and the president. Then, brainstorm who else you can send it to: Would your friends want to support this? Your co-workers? Your school district? Your doctor’s office?

Click send.

Nice work!

If you feel this is something you really need to dive into, do all of the above and call your legislators’ offices and make an appointment to go visit. You can go to your local office, you can bring your friends—keep your appointment and stay on target (politicians like people and will want to talk about how you like the new park in your neighborhood or how the bridge named after them is working out!) Bring your letter and leave it with them.

Excellent!

A trip to your legislators offices in Washington can be very effective as well. March 2, 3 and 4th is the Disability Policy Seminar in Washington. This conference will give attendees a course on all of the disability-related issues before congress at this time and on the last day you will make appointments and go talk to your legislators about the issues. It is a whirlwind event—extremely worthwhile.

Hope I see you there!