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.

Change

Recently I was in a group of parents talking about the challenges facing their kids who receive special education services, and as usual, someone in the group lamented that teachers are just not prepared to work with kids like ours. The parents all nodded their heads and then someone said (as someone always does) that this is just not what teachers expected to do when they were in school.

I nearly bit my tongue in half not to jump in with an inflammatory response—but that’s what a blog is for, right?

People say this about teachers all the time and it drives me NUTS! If I were a teacher I would be incensed!

First of all, the law that sent children with disabilities to school was passed in 1975, not last week.

Secondly, we live in an age of change.

I’m a nurse. Since my graduation back in the dark ages there have been huge changes in my field. The politics of healthcare are different, the economics are different, what we know about the body is different, the medications are different and treatments are different. Even our day-to-day activities have changed: we do all of our charting on a computer now—I couldn’t even type when I got out of school.

My friends in that particular conversation were an engineer, a business owner, and a computer specialist—fields which have also changed drastically in recent years (remember Cobal?)

Beyond this, when a nurse comes to me and says that she or he does not know how to do something we look it up together, I talk them through it and I arrange for further training if needed. If that same nurse came to me with the same issue 6 months later it is likely that there would be disciplinary action—up to and including the possibility of termination. And this is for an LPN who has had less than a year of vocational training!

All professions change and all professionals are expected to keep up. Teachers actually have an edge—they specialize in learning! In most cases teachers have kept up with their professions as much as the rest of us have.

The teachers in my district are excellent. They have masters degrees, they have mentoring and staff-development. They are completely committed to educating kids—my three children who have vastly different learning needs are all learning well. However it is not always easy.

When we nod and accept that the problems with educating our kids is that teachers are unprepared we insult teachers. Worse than this, we stop looking for the actual barriers to education. Things like administrative commitment, availability of support personnel, availability of pertinent trainings, availability of appropriate technology, political pressures and the like.

If, instead of being resigned to pseudo-problems, we addressed some of these actual needs in our schools we could create success for everyone.

Beliefs

All generalizations are false, including this one.
Mark Twain

(I just love Mark Twain!)

A few years ago I worked with a patient whose goal for treatment was that she would return home. The problem was that she had several significant medical issues, lots of complications and was struggling in therapy. It was the belief of our medical experts that for her, going home would be unrealistic.

The other problem was that she and her family were immovable. We were not to lower our expectations or change our focus from rehabilitation to maintenance—she WAS going home according to them.

To their credit the staff didn’t hold back. All therapies were delivered fully, all options for equipment, medical interventions and community supports were thoroughly explored and implemented. We pulled out all the stops because we really are patient centered folks, but all the while we were shaking our heads and telling each other that we just KNEW this was not going to work.

After a couple months of this a care team meeting was held…to discuss…drumroll please…DISCHARGE HOME! And as far as I know, this woman is still living home today.

We, the experts, were wrong (and maybe just a little arrogant!)

Not only were we wrong, but if we had been a different type of folks and had not placed patient-choice above our own beliefs we could have done some serious damage. We could have enforced those beliefs and through our actions and inactions created a never-going-home reality for her—a horrifying thought.

I have a friend who has an 8 year old son who has Down syndrome and some autism-like features. At home he is a very capable little guy.

He rides his bike independently on family outings, looks up Netflix selects and starts movies on his own. He uses his communication device to communicate not just that he likes the movie Cars, but why he likes it. He also easily swims the entire length of their pool over and over, plays with his sister and their friends and reads independently, to name just a few of his skills.

At school it’s a different story: they limit the use of his communication device to expressing needs, they insist that all of his work be hand-over-hand with an adult, they punish him for behavior that the other children are allowed to do (most recently he was dragged down the hall by two adults for trying to high-five his little sister in the hallway—a common greeting between siblings, neighbors and acquaintances at that school), they exclude him from opportunities to learn background knowledge (and then criticize his literacy ability based on low background knowledge,) and exclude him from opportunities to practice more mature social skills (and then punish him for having lower-level skills) among other atrocities. They do all of this because it is their belief—all evidence to the contrary—that this is what he needs.

This child is being disabled, not by his chromosomes, not by his diagnosis, not by his capacities or skills or potential. He is being disabled by a group of people who are enforcing their beliefs about what his life should look like and through their actions and inactions are creating that reality—at least at school.

His friend’s mother was watching them play the other day and exclaimed to his mom, “Why, if he didn’t LOOK like he has Down syndrome, they would be EDUCATING him!”

This is probably accurate and it’s heartbreaking.

It is difficult to be around people who are different from yourself without stereotyping. The world is full of racism, classism, age-ism, etc, etc, etc—clearly this is a human flaw. And sadly adding a layer of expertise can, instead of expanding our knowledge of possibility, just solidify our prejudices and give us the power to enforce them.

Since expertise is not a defense against limiting beliefs, what is? Patti Digh in her blog 37 days (can you tell this is a favorite??) suggests Unlearning as a first step.

In addition to a healthy dose of unlearning I would add something I read from an article called The Least Dangerous Assumption. Written by Cheryl Jorensen, Ph.D. and published in Disability Solutions in 2005, the article quotes Special Education researcher Anne Donnellan who says, “the criterion of the least dangerous assumption holds that…. educational decisions ought to be based on assumptions which, if incorrect will have the least dangerous effect on the likelihood that students will be able to function independently as adults.”

The article goes on to illustrate the different lives that a limitation paradigm and a least dangerous paradigm could create for the same child. The comparison is compelling.

Those of us in healthcare and education are in decision-making positions nearly every day. We need to Unlearn the portions of our expertise that create limitations for others and make the least dangerous assumption.