Posted on the health literacy blog:

http://healthlit.wordpress.com/2009/07/15/five-points-to-a-clear-message/

It’s a part of a series.

For those who have read for a while, you know that I enjoy teaching through writing. This has good points and challenges. And sometimes they are both of those at the same time!

I write a beginning blog for work I do in health literacy for people with intellectual disabilities. The topic for the next few weeks may be of interest to those who are interested in this blog.

http://healthlit.wordpress.com/

Enjoy!

(An audio version of this blog is available at the end of the post)

“Loneliness is the only real disability.”

(David Pitonyak)

This is a quote that is used often. Though I’ve credited it to David Pitonyak, even he is not sure who said it first (Judith Snow? Beth Mount?). I imagine that’s because it makes sense, that we all come to this conclusion over time.

I mentioned before that I recently finished reading The Shack by Wm. Paul Young. It left me with many thoughts to ponder and quotes that capture them. Including this one regarding the value of relationship vs. the structure of rules.

“It is true that relationships are whole lot messier than rules, but rules will never give you answers to the deep questions of the heart and they will never love you.”

The Shack, pg 198

These two quotes together leave me with the following question: If relationships are key to experiencing value and quality lives for people who experience disabilities, why do we continually increase the rules by which they must live to receive our support?

Andy, my son who experiences different disabilities, is 20. He’s in that place where he’s slowly moving into what is considered “adult life.”  Because of earlier decisions, he was able to gain access to Social Security Income and a Medicaid Waiver when he turned 18. He was lucky not to wait.

In theory, this sounds like more help that we’ve ever had. There is assistance to hire people to support him now, so that I might be able to work. What’s the catch?

The rules. The relationships.

Andy lives with us, and I mistakenly thought that we would be able to access his money to hire people we deemed appropriate to follow Andy’s interests to build a quality life and support network.

Silly me.

It seems we must write measurable goals so that folks can show what they’re doing with him. This need for goals and objectives is new. Our early goals for his Individual Support Plan were broad. The goals did cover the important pieces  for Andy to live an acceptable life at home with his parents. It’s not enough to support him to get out in his neighborhood to make friends. We have to know how to do that, how many times a week we he will do this, and what skills he needs support with to do this.

Sounds like an IEP (Individual Education Plan used in school settings) to me. Those haven’t worked too well either.

Following the rules, even if one is written regarding friendships, does not mean he won’t be lonely. True, following the rules means he has a direct support provider – Andy’s not one who will be independent in the community or at home. However, we all know it’s possible to be extremely lonely even with others present. Especially if they are paid to be there.

Rules do not create relationships or friendships. They create structure and walls.

What works best with Andy is to develop a relationship. build activities around relationships. He is more engaged, more independent, and more fun to be around (thus more fun to support) when  he feels he is with a trusted friend.  He is all about the interaction with people who are happy to see him, enjoy spending time with him, and are his friends.

It’s tough to know how to write a measurable goal and objective for  creating and maintaining a relationship – something that’s really not very objective or measurable at all.

Not to mention that fact that all relationships – regardless of who is in them- change with interests and time. It’s natural for things to ebb and flow.

But if Andy’s relationships and interests change, it means a new set of goals and objectives so his medicaid money is spent appropriately.

There must be a better way to build a bridge between safety, fiduciary accountability, and relationship. That includes, of course creating opportunities for natural supports in his life, which is more difficult than it sounds. I’m not sure yet what that bridge will be, but I hope to find it.

In my opinion, rules stifle the ability to create true relationships. So if the rules reign in a person’s life, then disability is more pronounced due to the isolation and loneliness they bring.

I plan to remember this as I continue to support Andy – reducing loneliness is going to have the greatest impact on his life….and mine.

Andy and Meagan getting acquainted. The start of a long-term friendship.

_______________________________________________

Episode 3: Relationshps vs. The Rules

joan605’s Podcast

“Submission is not about authority and it is not obedience;
it is all about relationships of love and respect.”

The Shack, by Wm. Paul Young

“Submit”   “Comply”   “Submissiveness”    “Compliance”

There are a few words more hotly debated. These words, which are synonyms, represent a belief, or attitude, usually about a relationship. They are used when discussing marriages and when discussing support for another person – with and without disabilities. “Compliance” is a frequent term used regarding students receiving special education  services and for adults in the disability service system.

When I read or hear them, my thoughts immediately go to the word, “control.”

I most often hear the notion of submissiveness or being asked to submit used in religious circles when discussing the roles of partners in a relationship or marriage. 25 years ago when I was getting ready to marry, it was a topic of one of our marriage counseling sessions required by our church. I don’t remember much about the session except that my girlfriends and I were too independent to fit the “submissive wife” model we believed was in question. In some circles, I am considered a rebel for not being “submissive.”

“Compliance,” on the other hand is something I hear repeatedly – from teachers, direct support providers, health care professionals, program managers, case managers, and policy makers – when discussing people with disabilities. Many classrooms use compliance-based tactics to obtain “good behavior.” Many people who provide support to others consider it a good day when the person they are working with was “compliant” and followed all commands. But I don’t want my son, or the people I support to be “compliant.”  I’d like to hear what they have to say! Once again, I am considered a rebel in some circles.

Let’s look at the words: Webster’s Online Thesaurus offers this about being submissive: “readily giving in to the command or authority of another.” Words with the same meaning (synonym) include compliant.

That does not sound like a relationship I want. I am not a rebel. I just believe in respect. It seems to me that if I care about the person I am in a relationship with (as a wife or friend),  I would never ask them to do anything that felt submissive. It’s true we sometimes do things or allow choices that we aren’t fond of in a relationship, but if we care about the other person, we do not ask them to “submit” if they feel oppressed.

Now let’s look at the word, “Compliance: a readiness or willingness to yield to the wishes of others.”  Words with the same meaning include submissive.

Hmm. Now if it said “yield to the wishes of your Mother,” I might go for it. But it doesn’t. To be “compliant,” means a person yields to the wishes of others.  If compliance is your goal, then  your goal is for the person you are working with to yield to the wishes of others, rather than their own, always. That’s certainly not a concept I think of when I think of a quality life or self-determination!

To me, the belief system using these words is a power dynamic. One person in the relationship holds the power of the other person. I don’t want to dive into what this means for a marriage or other intimate relationships.  But since there is a great deal of polarizing  discussion about submissiveness with regard to marriage, it seems important to illuminated the similarity between that debate and the debate around “compliance” for children and adults with disabilities.

I’ve always believed that if I truly care about the other person in the relationship, I won’t ask them to submit or comply. Asking someone to submit or comply so that I can have the power in the relationship hardly seems respectful. Since I want respect from those I spend time with, both in and out of work, it makes sense I should offer them respect, too

The skill for a successful relationship is in the ability to communicate, collaborate, and compromise.

I have just finished reading The Shack by Wm. Paul Young. It is a very abstract view of religion, clearly from the Christian point-of-view. The focus of the message, however, is on relationships, respect, and forgiveness. I’ve found many thought-provoking passages, including this one:

“Submission is not about authority and it is not obedience;
it is all about relationships of love and respect.”

When I read it, I thought, “what if I used the word, ‘compliance’ instead?” A few minutes later, I found that compliance is a synonym (has the same meaning) of submissive. Bingo.

Compliance “is not about authority and it is not obedience;
it is all about relationships of love and respect.”

This really works for me. You see, if I respect the person I am supporting by listening to them, listening and acting on what they like and do not like, then it is more likely they will choose to collaborate with me in things that we do.

Generally when I’m sitting in a meeting about Andy or listening to support folks talk about working with someone, I doesn’t sound like this is the definition they are using for “compliance.” Usually they mean, they want someone to do what they tell them. They want the power to tell the other person what to do.

I propose we take this one step further:

Providing support “is not about authority and it is not obedience;
it is all about relationships of love and respect.”

This is my definition of support for a person with disabilities. It works very well for me. It is a definition that, when the tables are turned in my elder years, will allow me to feel good about myself. I suspect it is what Andy – and all people with disabilities – want in their life.

I am currently watching this play out in our home this summer. M provides support to my son Andy. She’s worked with him before. They are very fond of each other. M respects Andy’s communication style. She listens intently and let’s him know what she hears. In one week they’ve gone on all sorts of adventures – more than I would have imagined – and today he started using the communication system others have avoided making available.  He does what she asks, albeit in his own good time, and respects her in return. It has been a joy to watch.

Could it be, if there was less “submission” or “compliance,”  we would have far less need for forgiveness in our advocacy? (see “Forgiveness and Advocacy: An Effective Complement”)

What will it take for this to be your definition of supporting someone?

The "Mom's" on a walk: Sugar, Baba, Joan, and Ryan.

For as long as I can remember, I’ve called my Mom at least once a day. I realize now that I am fortunate that my relationship with my Mother – both my parents – is healthy and good. Sure, we have our moments, but for the most part, my parents are the people I can count on – anytime, for anything.

Mom’s been gone just two months. Most of my tears have centered around intense memories of the last few weeks of her life. Death, no matter how it happens, is a tough process. Don’t let anyone fool you.

Mom was always one of my ke “go-to” people for Andy, my 20-year-old son who has disabilities. When she called me in Alaska during a visit with our oldest, Ryan, to tell me she had cancer, she was hanging out with Andy. But from that moment forward, she was robbed of that gift.

Moving away from her help has been a very hard transition. We’ve really had a tough time finding someone who fits Andy – and us – well. We were spoiled for a few years by Meagan, an amazing young woman who has a dynamic  nephew with Down syndrome.  Mom watched us go through support providers, one after the other, wondering, “Is it US?”

Well. Meagan needed some work this summer. She’s a teacher and wants to get some classes in this summer. We hired her in an instant. I”m still figuring out how to pay her enough, but it does not matter! Andy was thrilled to see her the first day. We talked and filled out papers and then decided to see how we’d all do on an outing.

Wow.

In two hours we did more than I typically do in one day with Andy. We rode his bike up at the school, we went to the store to show Meagan where the best gluten-free foods are, to 7-11 for a slurpee, and even a short walk.  It was amazing. Andy was happy and loving every moment with his old friend.

I realized I needed to run to the post office to mail my taxes (June 15!) and ran out the door, leaving Meagan and Andy to hang. And while I was driving to the bank to transfer money, it hit me.

Where is the phone to heaven?

I needed my Mom. Not because my life was awful. Not because it is unfair she has been taking from me. Not because she was too young – I am too young to be without her. I needed her because I had something wonderful to share.

A new experience. Let me tell you, the sense of loss in that moment was 1000 times more intense than anything I have felt over the last two years.

I am not sure how I will meet that need. There’s no one in this world who understands the impact of the smallest things on Andy and me the way Mom did.

I am, however, thankful that perhaps the most heart-wrenching moment I’ve felt was because of a good thing. It’s a testimony to Mom’s role in my life – my confidante, my friend, my MOM.

I’m going to keep an eye out for the cell phone to heaven.