Wednesday, February 20, 2008

Ten Ways to Avoid Burn-out for Disability Advocates


My alphabet series continues with all the hard letters ahead!! Today is T…

Whether you are involved in personal advocacy—facilitating life for yourself or another person who has a disability—or whether you are advocating for improvement in entire systems and cultures that affect people with disabilities, the most difficult thing to manage is our own energy. Many times burn-out and exhaustion (or the fear of burn-out and exhaustion) keep us from getting involved.

There are, however, people who stay active for years and years without being consumed—so how do they do it???

I believe that often these feelings of burn-out stem from a feeling of helplessness. I will begin with a list of 10 antidotes—I would love you to put your own additions in the comments section where anyone who reads this can benefit from them.

Self care. Taking the best care you can of yourself is the FIRST and most important advocacy skill anyone can learn—and sometimes one of the most difficult.The realities of our lives often affect our most basic functions. If for example, our child does not sleep, we might not sleep either. While we may need to live with very different sleep patterns, we should not ever make the mental leap that says our sleep doesn’t matter. Even if we haven’t come up with a viable solution yet, our mindset needs to affirm that we and our needs DO matter.

It is counter-intuitive, but an attitude of self-respect makes us respect-able to the folks we are approaching. Advocacy is more successful among equals. If we give the impression that we are suffering martyrs folks will need to “rescue” us—and we won’t have input, instead we will need to be grateful for whatever they can come up with. If people see us as inspirational heroes there is nothing they can come up with that will meet our standards, so they are off the hook to try to. We again, will just have to deal with whatever they offer because they ‘could never reach our level.’

If we are equals at the table (any table—at school, at work, or at the statehouse) we can better work to craft something that will meet our needs.

Caring for yourself happens behind the scenes, but the attitude of self-respect that it instills in you is a very effective advocacy tool. Try it, you’ll like it!

Inspire yourself. Surround yourself with uplifting things as much as you can. Artwork (gallery-ready, or posters, or something made by your kids—your choice!), music, movies, newsletters, e-subscriptions, or whatever will improve your ability to address your needs with others.

If your faith tradition has a daily discipline that inspires you, try to fit it in (modify it for your needs—it’s a reasonable accommodation!). If you have friends that always make you feel better, get in touch with them and if you have friends that bring you down avoid them!!!! If a certain color, or wearing jewelry or not wearing jewelry inspires you, go for it!

I like the movie Robots which is good since I see it many, many, many times a week (“See a need, fill a need”—who wouldn’t love that?), I like Natalie Grant’s song What Are You Waiting For, I love Darynkagan.com and Gimundo.com, I subscribe to charityfocus.com, I listen to a fair amount of Irish music… None of these are the focal points of my life—they are merely the ‘soundtrack’ and set the scene.

What inspires you? What does your ‘soundtrack’ sound like? What scene have you set? Share your ideas, I want to know!

Develop skills. There are classes, on-line resources, books, and more experienced mentors in nearly every area of advocacy. Knowing how to write a powerful letter, give testimony, use a microphone, negotiate, look up a law, understand a law, meet with a legislator, etc is very empowering.

A person who has these skills is not intimidated—does not feel helpless—because they can address anything. Knowing that you are able to face the situations that may arise in your life is a great way to prevent that overwhelmed feeling that makes you want to crawl under your bed. Having the tools you need on hand, aka being prepared, works—whether you’re trekking through the wilderness, climbing mountains, or living with a disability.

If you want trainings there is a Partners in Policymaking program in most states (there are also on-line Partners sessions), there are Parent Training and Information Centers in every state, there are University Centers on Excellence in Developmental Disabilities around the country, and Parent-to-Parent is everywhere.

Over to the right hand side of this blog are listed many great books and websites that teach skills—check them out!

What else would anyone recommend?

Be informed. Once you have the skills you need, knowing what is going on is the next step of empowerment. You need to know your rights, you need to know when things are changing, and how and why. Staying aware prevents overwhelming surprises and allows you to plan advocacy efforts that can make a difference.

Have a sense of history. When you are arguing with your school district or trying to change a law it is easy to get frustrated and think that your efforts make no difference. Remembering that 35 years ago that people with disabilities did not have the RIGHT to an education, that no one had ever considered accessibility, that the life expectancy of people with Down syndrome was 9 years old helps. It helps us to remember that the efforts of other have moved things forward, and ours will too. Little by little.


Respond. Often our feeling of helplessness come from feeling we should ‘do something’ and then not doing it. Do not buy into all-or-nothing thinking and decide that since you can’t run for president you can’t do anything at all. Pick an action and do it—you’ll feel better.

Right-size your response. There are two aspects to this idea. First, be strategic and choose to do something that has the highest chance of making a difference. Secondly, choose something that will satisfy you.

Years ago my brother worked several small part-time jobs. He was in college and needed money without ongoing responsibilities—it was perfect at the time. When he was done with school he kept those jobs for a while and eventually the lack of connection and cohesiveness began to depress him. At that time he needed one job with ongoing responsibilities that would BUILD something for him.

Sometimes you need to just pass along e-mails, sometimes you need a project, sometimes you need to make a career of an issue. Listen to yourself, and invest what you need to invest to be satisfied.

Supersize EVERYTHING! I don’t mean when you are out to eat. I mean get as much bang for every effort you make as you can. If you write two minutes of testimony and speak at your county’s budget hearing make copies of it for each of the legislators to have, tweak it and turn it into a letter to the editor, tweak it again and turn it into a newsletter article, e-mail it to as many people as you can think of, etc.

Make your efforts count by putting each thing you do to work in as many ways as you can think of!

Friends, supporters, and mentors. Have them, be them. Enough said!

Creativity and passion. The successful long-term advocates I know are creative. They look for new skills, new approaches and new ideas in advocacy. They do not keep doing the same things over and over and over.

They also have other passions and interests in their lives. (Gary DeCarolis calls them ‘sanctuaries.’) They are active in their churches, travel, make stained glass, garden, collect antiques, read voraciously, cook like fiends or SOMETHING!

That's 10. What should we add?

6 comments:

Anonymous said...

What about a sense of humor? Having the ability to laugh at yourself and at certain situations is necessary to retain sanity, yes?

Terri said...

ABSOLUTELY!!!!!!! Oh my goodness, how did I forget this?

Thank you--I wonder what others would add?

Karen said...

Hi Terri,
Thanks for your support on the Steak 'n Shake issue!

Jodi said...

I'm the parent of a teen with disabilities and also work to provide emotional support, advocacy and connections to parents of kids with special needs. In other words....I am a 24-7 disability advocate. It is difficult to avoid burning out. The top ways I do it are: set boundaries (know when to say no), HUMOR and the ability to laugh at every situation. My friends definitely help. Lastly, I keep in mind who I am doing this for (and it's not myself).

Terri said...

This is wise counsel! To "keep on keepin' on" as the saying goes we really need to maintaing perspective.

Thank you, Jodi

Anonymous said...

it is all about keeping it real =]