Unexpectedly Effective Advocacy: The Success-Experience

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.


My Aunt Mary Ann, my father's oldest sister lived in our town when I was growing up. She would always say that she was my 'spinster, librarian aunt' which use to upset me to no end. It was true. She lived alone and she was a librarian, but she was also brilliant and engaged and vital, and words like "spinster" used to offend my spirit when I was young.

I would spend about a weekend a month at her house (overnight!!) Not only would she have picked out the best books in the world for me, but we would cook and sew and work on projects and snack on cranberry juice or tea and homemade cheesecake-brownies or lemon bars (or chocolate chips right out of the bag!) And she would talk to me about beliefs and ideals and her philosophies on education and more.

One weekend nothing we touched worked--sewing projects wouldn't go together, we ran out of supplies for some other project right in the middle, and the recipe we were experimenting with for dinner went up in flames. We were both miserable.

On the way to Don and Bob's (One ground round-ONE!), I said that I was surprised that we were going out.

She smiled at me and said, "Terese, what we need now is a success-experience."

Apparently this was not just her idea, but something written about in education articles at the time. The idea was that to be effective you sometimes need to prime the momentum pump with something positive.

Dinner was delicious, and I had to admit the weekend turned around--the next day's projects weren't nearly as disastrous.

This little nugget of wisdom has stayed with me ever since and it is surprising how helpful it can be--in life and in advocacy.

When my kids were little and things would go sideways, ramping things back and playing a game we were all good at, or taking on a task we knew we could conquer would put us back in the mood to try something more challenging.

It works at school and with programs as well. My friend's son demonstrates some challenging behaviors at school. When the classroom team is overwhelmed and jumping to all sorts of drastic conclusions my friend and I often brainstorm about how to make things better. At one point we chatted about success-experiences and she decided to try it. She listened hard to hear what the teachers were saying was their biggest problem. Then she applied her know-how to that problem--just that problem.

She offered the team strategies for addressing that problem. She created visuals, provide documentation and whatever else it took to iron out this one issue. The team was not exactly receptive to her ideas at first, but when they applied her strategies and they worked, really good things began to happen.

The team became energized and started believing that they could be successful with her son. And my friend's credibility as contributing team-member was enhanced.

This is something we both use as a first-line strategy nowadays.

I think it is more effective if you pick a high-impact success (a fulcrum), but if things are bad enough start with ANY success you can get.

The same is true in systems advocacy. Little successes set the stage for bigger successes. Getting simple legislation passed creates relationships within the disability community and with community leaders that can lead to bigger projects and bigger successes.

(Black and white pictue of Don and Bob's restaurant with lots of vintage cars in front from here.)

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.

Advocacy Skills: You Too Can Give Testimony

Yes, you. Yes, really! Trust me! :)

As mentioned in my last post I gave testimony at the NY Senate Finance Committee Budget Hearing on Monday. I learned to give testimony during my Partners in Policymaking training and I learned even more Monday. I traveled with a friend of mine who was scheduled early in the day and I was scheduled later (even though I signed up before she did!) I ended up being the last speaker of the day so I pretty much heard EVERYTHING. It was a long day.

First, the basics: Many agencies or branches of government hold hearings or have opportunities for the public to speak their piece. I have attended hearings hosted by the OMRDD, Department of Education, County Legislature and more. You can learn about these opportunities from connected friends (get on an e-mail list or 7!!!) or from agencies' web pages. Regional budget hearings are a new innovation in NY--a very positive one, I think.

Hearings are held when a group or agency wants to hear from the public either to guage sentiment, gather information or demonstrate the existence of support/dissension on a topic. They will announce the hearing and often include a list of topics they are interested in. You don't need to address all of them--just what interests you.

The announcements also include things like how much time you will have to speak, whether or not you need to register and whether they want copies of your testimony (bring some anyway and give them to the clerk even if they don't formally request them.)

Giving testimony is really a good type of public speaking--you usually have only 2-5 minutes and you are EXPECTED to read it.

People generally begin by thanking whoever they are talking to, introduce themselves, give the body of their thoughts, and end with a call to action (telling the panel to either do something or stop something.)

After listening to way too many folks talk the other day I have some other pointers to add:

First a RULE (NOT a pointer!!!) Stay within your allotted time. Write your testimony, practice it and edit it until it fits. Do NOT go over your time. EVER!!! If you do I want you to imagine my pointy elbow in your side--that's right, a little virtual negative reinforcement for you. Because I care.

I know--you're passionate. I know--you have important things to say. Guess what?? Everyone there is passionate and all the issues are important. Once time has been called, no one cares about your ideas or issues anymore. They just want you to go home.

That is not the impression you are trying to make. Cut it!

To their credit the Senators remained pleasant and engaged all day. I can't imagine how. I did not catch any of them dozing or rolling their eyes... very impressive, actually.

Be memorable. There are a few ways to do this. You can incorporate some short, quotable statements or sound bytes in your talk. Don't overdo this or you will sound like an advertisement rather than like testimony, but make your take home points stick with folks if you can.

Tell your story. An agency director I know elected not to go to the hearing because he thought hearing from parents would mean more. In retrospect, I think that was a good call. There was one mom who told the heartwrenching story of her child's behavioral needs and the services that rescued her family. She had the whole room wiping their eyes--I would not want to be the legislator who cut her program! I don't even know if she ran over time, that's how engaging she was.

Connect to your issue. Use word pictures and examples. Try to touch BOTH your listeners' heads and their hearts.

Numbers. Now I admit I hate numbers, and it is likely that people on the Senate FINANCE Committee don't hate them as much as I do. Yet, sitting in a room hearng list upon list of numbers kind of makes them all run in together. Give a few salient numbers. Give your numbers some context. Someone talking about libraries pointed out that their user numbers were greater than the attendance at the Buffalo Bills and Sabres games... And even I still remember it.

Delivery. Speak with some enthusiasm. And as much clarity as possible. Edit enough that you don't have to rush. You don't need to be a master-performer, but enthusiasm and blahness are both contagious. You want to generate enthusiasm (Enthusiasm doesn't just mean being happy-happy. Passionate frustration works too.)

Hyperbole. I really didn't see this Monday, but I have at other hearings. Don't be over-the-top in your manner or descriptions. You are trying to be credible, not generating market-share for your talkshow. Be compelling AND credible.

Structure your statement so that you can cut out pieces if your point has been made repeatedly or if they decide they need to shorten everyone up for time (though if they just turned off microphones afer time was called this would not be necessary!) Journalists recommend the "inverted pyramid" style of writing. I don't do that, but I do organize things in chunks I can remove if needed.

Practice what you have written. Fix things that just don't sound right. I wrote about dismal employment rates, my mouth really wanted to say 'dismal unemployment rates.' After flubbing it 4 times I changed it... it was SO much easier that way!

Written testimony. Bring copies of your testimony--and other supporting documentation--for the committee even if they don't ask for it. And include contact information. This way they have something to read later if they are so inclined and if you are cut short they still have your whole spiel to consider.

Change it up. If I go to another hearing about this I will add different points (like, no one mentioned that Medicaid dollars all get spent in the local economy...) Speaking to the same senators you would want to set a familiar tone, but not be totally repetitive.

Supersize it. If you spent the time writing testimony it should be USED! Blog it. Put it in your group's newsletter. Turn it into a letter to the editor... send it to legislators who weren't there... Come up with your own ideas on this. Do not ever waste efforts!

It isn't difficult... it is over in 2 minutes... it can make a difference. Try it!

This picture is my friend Jackie ready to give her testimony.

Unexpectedly Effective Advocacy Skill #6: Analogies

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

One of the techniques I have used to reach understanding with people who work with my kids is word pictures or analogies. Now this must be applied with a respectful touch--like anything else it could be insulting if you are not thoughtful (Obviously insults NEVER lead to understanding--which is in fact why people use them, but I digress... )

Sometimes, with our complex and highly individual kids, it can be hard to get people to understand them. It is common to try reports, evaluations, expert testimony, but sometimes providing information is not not enough to build understanding. (I have blogged about this before!)

When you are negotiating with a team about placement or classroom strategies or with legislators about removing community barriers and information fails to build the needed bridge many folks get frustrated and stomp out.

I would suggest that they have more tricks to try--they aren't done yet.

The next thing to try is a description of the things that are happening now (for example if your child is succeeding in Sunday school but not in Social Studies) or things that are possible if the new strategies or laws are implemented.

This is the time to be descriptive--supporting this with photos and more can also be helpful.

Yet, sometimes this fails also. The people you are talking to don't see what you mean still, they don't see how this relates to them--or they plain don't believe you.

Nope, it still isn't time to quit or throw huge tantrums--tempting though that will be!

Along with all of the above tools I recommend the using of analogies, metaphors and comparisons to add reach to bridge you are trying to build. When a teacher or a legislator is not be able to imagine our children responding the way we say they will or that they should do what we are saying they should, try comparing the situation with something familiar that seems similar in tone.

Over the years I have compared:

*My son's accommodations--which his team saw as cheating--with eyeglasses (I tell the whole story here.)

*My daughter's need for both OT and PT with her need for both mittens AND boots.

*My son's need for separating input from output when he learns with juggling (and my lack of ability to do it!)

*My son's need for teaching organization skills with the way Spanish is taught. (This one started out REALLY heated because they were one day trying to encourage him to be organized by telling him he was smart, the next day they tried negative reinforcement and kept him after school... no one was teaching him what they wanted him to know.... grrrr....)

*My son's learning disability with a scene from a popular movie where someone was walking along through the woods and suddenly fell into a hole and no one knew where the character had gone. Can't remember the movie right now... some army flick...

Something to add to your bag of tricks... let me know how it goes!

Picture from here.

Ten Tips for Thriving with Teachers

Well now, summer is over and we are off with a bang!

1. Listen! You are looking for at least 3 things.

First, Your teacher's style. Many teachers fall into 2 very general categories. They either see learning as the result of wild discovery or of strong structure.

You need to hear their style and then show them how including your child will meet their agenda. (eg: Providing this____ for Junior will help them fit into your structure... or... Providing this _____ for Juniorette will help the whole class step into a whole new discovery.)

Next, you are listening for their fears. When you hear these you can tailor your assistance to alleviating them.

Finally, you are listening for the political situation they are dealing with. Sometimes administrators do not support teachers--especially those in special education--because of things that have nothing to do with your teacher or your specific child (I know this is not TOTALLY shocking to many of you!)

If you know what the situation is you can provide support--or engage the district to--in a way that your teacher is protected (or at least not endangered)

It requires strategizing, but you can do this. Because you have to. (I know, it's not fair, but it is true anyway... Sorry about that.)

2. Individualize your approach. Some teachers will respond beautifully to portfolios and disability info, others are offended that you don't think they know what to do with your child. Present your information in a way that fits your child's teacher and class.

3. Provide support. Whether this means providing data about your child's disability, or reports from outside professionals, or whether it means making "official" requests, etc so that your child's teacher gets what they need, do it.

4. Inform. A lot of times our kids need things that are unique and hard to understand. Use examples and analogies that people "get." If something you say isn't understood, change. Say it a different way--use examples and analogies--without ever implying 'duh!". If you imply disrespect, you, and your kid, are done. Keep trying. Respectfully.

5. Be as succinct as possible. When you provide data for teachers bullet it. Use sound bytes. Keep it as short as possible.

Teachers have lots of students and are overwhelmed when we hand them text-dense info about our kids (this is why I LOVE Paula Kluth's new teacher guides.)Look for quick, catchy ways to tell folks what your child needs.

I finally learned to say to teachers that 'my son cannot juggle input and output.' In other words, he can't write notes while he listens, for example. This phrase was understood by his teachers in ways that reams of reports never were. This small phrase gave them lots to work with. Then they succeeded. Then they were encouraged to look for MORE success.

Try it, you'll like it!

6. Don't do the work for them. They are educators, you (usually!) are not. Provide the basics and let them come up with the details whenever possible. (Though my daughter has had teachers who never had a plan B--in that case, skip this!)

7. Don't harass. AND, Don't back down. This sounds contradictory, but it isn't. (Or, at least I don't think it is!) Persistent, polite and PERSISTENT! They can do this, they specialize in learning. They want an easy day, but most really do believe in WHY they teach and believe in education. They just need to expand their vision to include our kids... we can help with this. Shame we have to, but we often do--and if we succeed, we succeed for way more than just our own kids. Absolutely worth it.

8. Be patient. Within limits. They may not make the jump to meeting your child's individual needs WHILE you are talking with them. But every thoughtful conversation plants seeds. Give them a reasonable amount of time.

9. Allow yourself to be surprised. Sometimes teachers or programs work in ways that you would never expect... or people who couldn't work with your child in 6th grade are great with them in high school... It is weird, but true. And people who don't get along with me sometimes do fine with my daughter... I am shocked when it does, but it does happen sometimes. If it happens to you, accept it. Enjoy it. Don't try to explain it. You have plenty to fight about, let the things that work, work... even against all odds!

10. Stay focused. It is always you AND the teacher vs. the barriers blocking your child. NEVER you two against each other. They and the administration may try to twist this. Do not let them. Ever. People have to adjust their views, and philosophies, and work days to accommodate our kids and it is easier not to. But if the focus remains in the right place our kids can succeed and surprise (and teach!) entire systems.

These are just my thoughts... What can you add?

To Battle or Not to Battle is NOT the Question

The conventional wisdom about life--and about disability--is that everyone should "pick their battles" in order to save energy.

On the surface this seems like reasonable advice, but some people interpret this statement to mean that the two choices available are DISENGAGE or WAGE WAR.

It's just not that simple--or that drastic. And since whole groups of people (including yourself!) will have to live with the consequences of your approach to advocacy, some things need to be considered.

To start with, the phrase should be "Pick your strategies," not "Pick your battles."

There is no escape hatch. Alice in Wonderland could escape down a rabbit-hole to an alternate universe, but that option is only available to Alice and bunnies--the rest of us need to live here. (Which is really ok, have you READ Alice in Wonderland?? Wonderland is a VERY strange, unsettling kind of place!)

This being the case, we need to make our home here--in our schools, and neighborhoods and communities.

We are home-making. Not escaping. Not battling.

In this light there are several things to consider when approaching situations.

To begin with, conflict is normal. People are different and have different viewpoints. Conflict is not scary or negative, it's a sign that you're alive.

And alive is good.

The trick is not to avoid conflict, but to manage it.

So, where do we start?

Step 1: Evaluate: Does the issue matter? Don't waste your energy managing issues that don't matter.

An issue doesn't matter if it has limited or superficial impact, or if it will go away on it's own in a reasonable amount of time. I put matters of taste and style in this category most of the time...

Kids' hairstyles don't matter. Kids'clothing styles don't matter (though modesty and cost and a few other things do!)

I think it was my dad who told me that adolescence and snow both go away on their own if you leave them alone long enough... I don't always remember this, but I try.

My kids (and husband!) eat their eggs with ketchup. I think this is disgusting. Yet, it does not matter. I will tease my kids and they will tease me about this for fun, but not one volt of my energy will be devoted to changing their egg-habits. (Though if they WANTED to change, I would be supportive! :)

If it doesn't matter, it doesn't matter. Relax, enjoy, go swimming!

Step 2: If an issue does matter, it is WORTH addressing.

Any un-managed or unresolved conflict causes more and more and MORE conflicts to deal with (my friend believes there is a mathematical formula for this. I'm sure it involves exponents... if someone finds one let me know!) For example, if you don't address the aide that treats your child dismissively, pretty soon lots of people have learned that behavior from them... YUCK.

Beyond this, even though it can look scary, managing conflict is a valuable process. Working through differences with people builds your relationship with them, earns respect, builds your own skills, and it makes the situation you are living in BETTER.

Talk about win-win-win-win-WIN!

Step 3: Conflicts are resolved (almost always) by negotiating, not battling--and as Ruth at Wheelie Catholic points out, not by arguing (who says there's no such thing as a psychic friend?!)

You negotiate, discuss, use laughter, ask questions (read my posts on Unexpectedly Effective Advocacy Skills here.) You hold Crucial Conversations and you Get Past No...

Managing conflicts that matter through negotiation is like caring for that swimming pool. It can be hard work, there is a definite process to it, it can get a bit dirty, AND it builds a healthy environment for you to enjoy.

If a pool owner quits tending the pool mid-season, or blows up the whole mess in a fit of rage, things get awful pretty fast and no one gets to swim.

Step 4: Finally, some issues matter a lot and cannot be resolved through negotiating alone. Sometimes it is necessary to move from Crucial Conversations to Crucial Confrontation.

These problems pop up relatively rarely, and when they do you MUST respond accordingly. It becomes time to 'pick your battle.'

When you must battle, strategize--a temper tantrum is not a battle plan. Neither is wishing or whining.

Get help, commit to the process, arm yourself with information, allies, and tools.

And. Win.

So you can get back to poolside!

Picture from here.

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!

Try this Tuesday: About that IEP

Oh yes, it is that season again!!! Here are some tips I hope you find helpful as you prepare for your IEP meetings.

1. Organize your thoughts. Someone gave me this acronym and I use it as a checklist for myself: MAPS: Management needs, Academics, Physical needs, Social needs. I divide a big piece of paper in quarters and brainstorm each area, then organize what I come up with. Lots of folks have different systems, but that seems to work for me.

2. Organize your papers. It helps, trust me. Go see the possible placements, meet the people involved.

3. Know your rights. Your child is entitled to an education as a citizen—not IF he is toilet trained, or WHEN she becomes more independent. NOW. If they need support to be successful, they can have that support. Maintain perspective—it will cost your community far more if your child is not educated than it will cost to educate them. Hold your ground.

4. Practice phrasing everything in terms of needs. So instead of saying “we want Susie to have the limousine” say “Susie needs a vehicle roomy enough to…”

5. Deal with your feelings. Before the meeting. Vent to your friends, your mom, the people you work with and your advocate. New parents are dealing with many new feelings, seasoned parents are dealing with HISTORY—don’t go into the meeting full of pent-up emotions. You want to be able to think as clearly as possible. Some emotion makes everybody care—too much can derail the whole process.

6. Consider your negotiables and non-negotiables. Consider the possibility of many paths to the same outcome. I wanted an additional year of pre-school for my daughter—within limits I could be flexible about WHICH pre-school.

7. Consider the school’s point of view before your meeting. If you don’t know what their point of view is, ask them. You need to be able to address their concerns. And, if their ideas are vastly different from your views, you need time to get yourself into a “respectful, but not agreeing” mindset. That mindset is necessary for the team to function. A shocked yell of “WHAT the _______!!!!!” can really take a meeting down a wrong road…

8. Bring someone with you. Bring your spouse, a friend to take notes, your clergyperson (who can share how helpful your child is in Sunday school) or an advocate. It is so helpful to have another person who witnessed what went on. And they often add perspective to the meeting (make sure well ahead of the meeting that you and whoever is going with you are on the same page, of course.)

9. Plan several ways to explain your perspective. At one of my son’s meetings they wanted to discontinue all of my son’s accommodations because he wasn’t improving (he has a learning disability.) I was able to turn things around by pointing out that accommodations aren’t therapies, accommodations are like eyeglasses: glasses don’t fix people’s eyes, they just adjust eyesight, and people who wear them can’t function without them—ever…

10. Strategize. When there is some disagreement much of the team will be at the table geared up for a fight. They expect (and will goad you into) direct assaults, anger and negativity. If you can surprise them with a relentlessly positive perspective, humor, well placed questions,and relationship-building strategies amazing things can sometimes happen.

Good luck to us all! What else would anyone recommend?

Unexpectedly Effective Advocacy: Strategic Use of Information II

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

Information and perception are always working—either for us or against us—with some attention and a few skills you can make information one of the most effective tools in your advocacy toolchest. I wrote about the setting some parameters about what to present and what not to present to support your goals a couple of weeks ago.

Now, you do NOT need to be perfect or understand EVERYTHING to advocate. And doing SOMETHING is always more powerful than doing nothing, but as a community we have full lives and want to get the most impact for any of our advocacy efforts. We don't have time or energy to waste--we need to think strategically.

I was pondering this at work this week and I thought something I learned as a nurse might help... When nurses are learning to adminsiter medications we are taught a little 5 item checklist that helps us keep track of what we are doing. When giving meds nurses need to make sure they have:

-The right patient
-The right drug
-The right dose
-The right route
-The right time

We call this little list the 5 Rights (clever, huh?) and when I think about it, this little list has some parallels in advocacy.

The right patient. It is obvious (I hope) what this means to nurses--and their patients!

In the case of advocacy I think this would mean consider your audience. Who are they? What do they want? What are their responsibilities? What do they know? What do they worry about?

Are you talking to self-advocates, parents (new or seasoned?), professionals, activists, college students or children? Or someone else entirely...

Adjust your presentation accordingly. Your examples, use of jargon and demeanor may need to change to meet the needs of a different audience--don't give the children's presentation at grand rounds at your local medical center.

The right drug. Again, it's fairly obvious how this applies to nurses. Advocates can translate this to "right message." Presenters--whether at IEP meetings or before congress--want to have a consistent pro-disability message.

Bobby Silverstein, famous for advocating for disability rights and his role in writing the ADA when he was on Sen. Tom Harkin's staff, gives this framework for issues that are pro-disability. He says pro-disability policy lead to greater:

-Equality of opportunity
-Full participation,
-Independent living and
-Economic self-sufficiency. (Bobby Silverstein, 2003)

Right dose. Patient tolerance for medications are very individual and specific. Too much of a medication can kill....too little will not be therapeutic.

The disability advocate needs to consider this thoughtfully. When we explode or over-do in our advocacy we can kill our issue with our audience... but if we do not say enough or say it strongly enough it won't be effective. Fortunately, there is a whole spectrum of possible responses between those two extremes. Attention to this issue alone can increase the effectiveness of your advocacy immediately!

Right route. Nurses need to know if a med should be given by mouth, injected or rubbed on the skin--these are not interchangeable!

Advocates need to consider whether their particular audience will respond most to 'heart' or 'head' messages. Or a combination of the two. What media should be involved? Consider using story. Author Robert Putnam points in his book Better Together that stories have the "...possibly unique ability to express thought and feeling simultaneously..."

Right time. Suffice it to say WHEN you take your pills matters. Some need to be given on an empty stomach, others need to be given with food, or close to bedtime, or not...

Advocates also need to consider WHEN they approach their audiences with their messages. Sometimes you must respond when the iron is HOT--the issue is burning now and being heard NOW is necessary if you want to have an impact. Other times it is best to strike when the iron is COLD--when the issue needs a long term approach or shouldn't be handled at the same time as some other burning issue.

For example, when the movie Tropic Thunder came out disability groups needed to put together a visible response immediately--protesting it a month later would have been useless. But working with the studios to increase their understanding and their working relationships with the disability community was a long term project that needed to be handled over time. (In fact we are starting to see the effect of those efforts now!)

I think having a framework for handling information strategically could be useful whether you are working on an individual need, or trying to change the world. Not as a formula, but as a framework for considering your options. Give it a try, let me know how it goes!

Picture from here.

Unexpectedly Effective Advocacy Skills: Strategic Use of Information (Part 1)

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

Information and perception are always working—either for us or against us—with some attention and a few skills you can make it one of the most effective tools in your toolchest.

Take a moment and read this article.

What struck you about it?

I have a few impressions:
• It is from Wasilla—a few short months ago I had never even heard of Wasilla.
• It’s a transition program—sounds quite community-focused. Lots of good skills taught and some success.
• But: WHAT IS UP WITH THE DISCUSSION ABOUT THE GUY’S HAIR?????

This sounds like a good program. And I found this part of the article upsetting.

If this article were written about me I would be mortified (though I almost never forget to brush!) If it were written about my older two children the screaming at my house would never end—and neither would the harassment they would get from their friends. Yet, it is almost expected that these remarks will be written about our kids with disabilities.

Some will say “but it’s accurate.” And it is of course. Truth be told, most all of us have used the bathroom and performed some personal hygiene today (or if we haven’t, we certainly should have!) Yet, for most of us, our success or failure in this area won’t make the papers.

The reporter was looking for a story that illustrated that the program was supportive. The program (accidentally, I’m sure) gave her an easy way out by holding conversations that should have been private in front of her.

There were choices. It is not that they HAD to humiliate somebody in order to get their point across. The program probably also showed the reporter a client who was using much support and many repetitions to learn a job skill. Same story about needed support—dignity intact.

The reporter chose the more sensational angle.

See, the program showcased what they wanted to say, they just weren’t as vigilant about not showcasing what they did not want to say.

We want the world to look at people with disabilities and “Presume Competence” as writer Kathie Snow says. We can support this by Presenting Competence.

And if this can happen with experienced programs it can happen to any of us, and it often does.

The trouble is we look at where we are and what’s next, not at the bigger picture.

We're like sheep. Yes, sheep.

Sheep keep their heads down and munch their way along from the hunk of grass they are eating now to the next tasty hunk. They don’t look up to notice that they have strayed far from their path, to see the wolf, or to see that they are on the edge of a cliff until it’s too late.

Lucky for us we aren't sheep. We can minimize these occurrences with some planning.

Start by planning your underlying message. Set some parameters that don’t really change no matter what you are trying to achieve.

Having standards in place helps keep you from making as many unknowing blunders.(There will still be some and they will make great blog fodder, but minimize where you can!)

This could keep you from presenting your child as totally pitiful (in their hometown where you someday hope they will get a job) in order to make $$ for your parent group for example.

Now you may want to raise money for your group and your child can certainly be a part of it—this only makes you think about how.

Decide where you intend to go: My family believes that our kids—all of them—are valuable, they belong, and their weaknesses or struggles do not cancel out their strengths.

Equally important: Decide where you will not go: We will not embarrass each other. We all have dignity which we will defend. Details are shared thoughtfully. Privacy applies to all of us.

Compare your current situation with your planned message frequently to stay on track. Also check in with others. I run some of my blogposts by my friends or my kids to make sure I am on track and not humiliating anyone.

This doesn’t mean I can’t tell most stories—it just sets some parameters around how I tell them. For instance, I can mention that I am doing lots of laundry because of a stomach bug, but can’t detail exactly HOW the laundry got so dirty (somehow I think my readers are ok with this!)

I can showcase the funny, the frustrating, the wild, the weird, the quirky and the sloppy, good, bad, and downright icky—I just can’t make my kids look pitiful, stupid or less—ever.

Not even for a good cause.

Setting the internal parameters is the first step. Over the next couple of Tuesdays I will talk more about using information strategically to affect the situations you face. Have a lovely week!!!!

picture from here.

Unexpectedly Effective Advocacy #3: Yes and And

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well…



Last time I told you to channel Colombo, today I want you to channel Glinda the Good Witch.

But don’t worry, I am not going to ask all of you to float around in bubbles and you will never have to say, “And Toto too,” in that Glinda way! This is a real advocacy skill for use with real problems—even big, difficult, snarly problems.

Let’s face it. When we go to our meetings, whether we are working on an IEP, a job idea, legislation we would like to see, meetings with our school board, etc there will be people who have ideas about what will work for us or our child that are just wrong. We want to scream “NO!!!” at the top of our lungs. We want to follow everything we hear them say with “BUT, what about….?” And really, who could blame us?

Our ‘NO’ can be a very powerful tool and putting up with the unacceptable is, well….unacceptable.

‘No’ can be the perfect word in some situations and, sometimes, taking another tack can be even more useful.

Here’s the deal:

‘No’ is a powerful word, and it is the word that EVERYONE hates to hear. Using it sets up an argument which immediately makes the other person in your conversation dig deeper into their own position—against you. This is true whether you are talking to 2 year olds or directors of special ed.

‘But’ is a negator. It is used to say that everything that was said before the ‘but’ is not actually true. (Think about that phrase, “I love you, but….” See, it IS a negator!) When we say ‘but’ we say that everything you said before, or that they said before, isn’t so—again setting up an argument. (However and yet are also negators, so don’t even try it!)

Now I can be a little feisty, and I actually enjoy a good argument now and again and there are also times when arguments really don’t work for me. First of all, the other side usually becomes more dug-in when we argue… and some people actually go into meetings with me PREPARED to argue! (Can you believe it??) Second, while I am happy to argue to advance my position, arguing to lose ground or even to stay in the same place forever does not work for me—I have neither the time nor the energy!

Channel ever-positive Glinda: Use ‘Yes’ and ‘And’ instead and watch what happens.

Imagine that you are at a school board meeting and the sports boosters are proposing expensive updates to the football field—while special education languishes.

It isn’t hard to predict the fireworks that could so easily happen and could go on for the next several months.

On the other hand, what would happen if we went with a Yes/And approach?

If a dad stood up and said, “YES, I agree, the updates to the football field are long overdue. We have kids who need football scholarships to build their futures and the district should support them in this—plus we are all big fans! AND we need to bump up the special education program because our kids with disabilities need specific services to build their futures and we need to support them too!

What has happened here? Several things:
• You have surprised folks who expected a fight.
• You have suddenly made allies of the second-most involved parents in your school (and who knows when they might be allies for you?)
• You have gotten your board thinking about possibilities instead of all-or-nothing choices. They may even come up with a way to do both, but even if they can't they are more likely to do the right thing and without blaming “those kids” and “those parents” for their decisions.

This works in a myriad of places.

When your child’s teacher says we are worried about little Doogie’s _______________ (fill in your own issue) so we are going to implement ____________________________ (fill in your own ridiculous plan that could never possibly work) so that his independent skills will improve.

Say, “YES! We are also concerned about Doogies’ ____________ and we agree that independent skills are the goal. AND we think that implementing _________________ will give him the supports to do just that."

The whole dynamic can change sometimes with these two little words AND to think “You had the answer inside of you the whole time.” Thank you, Glinda!

Picture here.

Unexpectedly Effective Advocacy #2: The Question

Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies that support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

The second unexpectedly effective advocacy technique is the question.

The question is a powerful tool for gathering information—especially when you ask the right question.

One of my friends told me years ago not to ask your child’s teacher “HOW” your child is doing in class. Ask “WHAT” your child is doing in class instead.

She had asked her daughter’s first grade teacher HOW her daughter was doing. The teacher told her that she was a lovely, creative girl, that she got along really well with the other kids and that she was a pleasure to have in class. Imagine my friend’s shock a couple weeks later when she received notice that her daughter was not passing.

She had asked the wrong question. When you know WHAT your child is doing you know HOW your child is doing, but that the reverse is not necessarily so.

This past fall another friend asked how her son was doing in math and was told that he was meeting expectations. Later she asked what he was doing in math and in the discussion learned that he left half-way through every class for a pull-out. She requested a schedule change—if he must be pulled-out she thought it should be during his study hall (where she found out that what he was doing was drawing racecars!) He has been doing much more in math ever since—and he joined an after school art club where they love his racecars!

Questions are also extremely useful for engaging people in discussion. They are also good for re-framing discussions that are difficult or going badly.

Do you remember Columbo? That’s his picture at the beginning of this post. He was a TV detective in the 1970’s. He was known for his dirty brown overcoat, his cigar and his schlunky car. I don’t think there was ever a fight or a car chase on that show—or even any real confrontations until the very end of each episode. He confounded criminal masterminds through the incessant asking of questions.

He was brilliant! Channel him!

There is something about the question mark that people can’t resist. If I state in a meeting, “ The regs state blah, bla-blah, blu, bla-bla-blah…” I will get icy stares, rolled eyes and very little conversation.

On the other hand if I ask, “So how can we tweak this to make it compliant with these regs?” People will answer. Not always happily, but I find if they haven’t shut me out we can usually get to a reasonable place.

I watched a lawyer use questions in an IEP meeting one time and it was amazing. The boy involved was academically gifted and had a significant behavioral disability. The district had removed his specially trained behavior support aide to cut costs. His team wanted her back, but could not say so for fear of losing their jobs.

So the lawyer started asking questions:

How often did Joey have outbursts when he had an aide?
How often did he require intervention from more than his aide?
How often does he have outbursts now?
How often does he require intervention from more than one person now?
Are these interveners trained?
What will it take to get them trained?
Is having the one trained aide and reducing the number of full-scale outbursts really more expensive than the current situation?

He got little pieces of information from everyone around the table, showed that the current situation was actually more expensive as well as less successful and got the district to agree to bring the aide back—all with questions.

Even when a meeting ends with a disagreement questions can be valuable.

Say the committee had agreed on a plan for your child that you know will never work. The committee thinks it’s done its job and you are heading home to figure out what’s next. End the meeting with a question.

Do not say, “I am concerned that this plan will not meet Junior’s needs for academics and appropriate social modeling.”

That is NOT a question (see, there’s no question mark.) That’s a statement. About you.

Instead ask, “How will this meet Junior’s need for both academics and social modeling?” or “How will this help Suzie-Q be more independent?

In the meeting either everyone will look at you and blink like fish, or someone will answer you—talking a bit to loud and too fast. Just shrug your shoulders up without responding further. Leave the question mark alive.

Every time the situation arises where the program does not meet both of Junior’s needs, or Suzie-Q is clearly more dependent your team members will hear your voice in their heads. You may hear from them to revise the program even before you hear back from your lawyer!

Could anything be better?

(Image from here.)

Unexpectedly Effective Advocacy #1: Laughter

Today I begin a new blog-series on advocacy skills. Since learning about my daughter’s diagnosis of Down syndrome and my son’s diagnosis of Non-Verbal Learning Disorder in the early 1990’s I have embraced advocacy skills—the skills of ‘speaking up.’ I have learned about successful advocacy through workshops, books and mentors and I have used these skills to change my kids’ personal situations, to improve systems and to promote public policies to support the recognition of the full citizenship of people with disabilities. Along the way I have picked up a few tricks that aren’t usually mentioned as advocacy skills, yet they work for me. Perhaps you will find them useful as well.

The first surprisingly effective advocacy skill is laughter.

There is a common recognition for the value of “making ‘em cry.” It is a technique common in congressional hearings, telethons, and sometimes in IEP meetings. While it is often effective, there are some weaknesses in the tactic that need to be considered—it is great for some situations, but not for all.

For one thing, in a congressional hearing a mom can tell an emotional story because someone else will make “the ask.” In my child’s meeting at school there is usually no one else in the meeting to pick up and do the next steps. If I do let myself get really weepy I have a tough time pulling myself back together to complete my mission.

For another thing, there is a very fine line between generating empathy (having others ‘feel with’ you) and generating pity (having others feel sorry for you.) Empathy connects people, pity separates people creating pitiers and an object of pity. Since the goal of most of my advocacy is to connect people and systems to people with cognitive disabilities (who are already seen as objects by many), pity is something I can’t risk.

And WORST of all, I can’t do it. Unless I am neck-deep in tragedy I just can’t plan to cry. Believably anyway. And when I am neck-deep in tragedy people tend to hear my emotion and not my point…

I could not use this strategy, but I could see the value of emotion as a bridge between folks so in my own mind I re-framed “make ‘em cry” to “make ‘em feel.” And one of my most effective strategies EVER is to share a laugh.

Now this is not derisive or mean laughter—nor inappropriate silliness, just small laughs that we can share that support me or my point…

For example, I went to a meeting once where most everyone wanted a certain educational (and consequently vocational) path for my daughter. I did not like their plan because my daughter had told us that she wanted to work in the school library someday and their path simply could never lead her there. In sharing our family’s vision I made lots of good points (trust me, I really did!) My list of my daughter’s skills and my idea’s attributes were concrete and clear, but no one’s heart really moved until I asked the following question:

“Can’t you just picture Jenn LOVING to tell small children to SHHHHH?”

Not outrageously hilarious, but everyone at the table started to chuckle, people started to nod and pretty soon they started to come up with creative ideas to form a new plan.

The other thing that happens when I share a laugh with folks is that I start to relate to them a bit differently as well—I see them and me as more equal.

Another time I spoke at a school about disability issues. I was there as part of an agreement the school had made with a parent group because of some very ugly district behaviors. They expected a verbal beating…I did not beat them, I attempted to build a bridge with them. I was not very successful at all at first and then suddenly things seemed to turn around… At the time I really did not know why.

When reading the evaluations after the event I got my answer. Someone wrote, “I was prepared to hate you…until you made me laugh." She went on to say that I did actually have a few good points...

I am not claiming that this will work all the time—in my experience NOTHING works all the time. But it’s painless, it’s free and the more tools we have in our backpack, the better!

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!