Community Education: A Paradigm Shift

By Janet M. Williams, MSW, Ph.D., communityworks, inc.

Imagine if you took a walk in your neighborhood and everyone seemed to know something about you, even though you’d never met. And it isn’t that you are a famous singer or that you’ve just won the New York marathon. It isn’t that you are a gifted artist. What they know is that you might have memory loss, impulse control issues, or challenges with judgment, reasoning, or problem solving. Perhaps you might be like that guy on the commercial who has pseudobulbar affect (PBA) and cries uncontrollably. You have a brain injury.

Your neighbors have been educated about brain injury, and they are ready to “deal” with you. The person who did the explaining thought this would be a great way to educate people about your brain injury, hoping they would accept you for who you are and include you.

I wonder how open neighbors, employers, or other people in the community would be to including you in their life if that’s all they knew about you?

What does the community need to know about brain injury? What do they need to know about you, a person who has experienced brain injury, specifically? How should professionals and others prepare the community for people with brain injuries to return to the community after treatment and rehabilitation? Should a person with a brain injury wear some type of alert bracelet or other identifier?

A Different Way to Think of Community Education

I have been supporting people with brain injuries and helping them to live in their own communities for the past 30 years. At the end of a day, I often ask myself what I need to know about brain injury. I have learned I need to know a lot more about how to connect with people, what community resources are available, and how to build a keen sense of problem solving to help people connect the dots in a given situation. I need to know how to help people make their way, learn about their own injuries, and decide for themselves how to accommodate for disability.

Moving from a place where you are surrounded by brain injury experts to a community setting is a huge transition. Here are the top ten things to know about living in the community with a brain injury:

1. Nothing for me without me. Those living with brain injury need to be in charge of their lives. That means that they must be involved in every conversation that relates to them. If they want someone to know about their brain injury, they need to be the one driving that process. That could mean that they explain it themselves or that they choose to have someone else explain it for them. There are no meetings about the person without the person.
2. Never expect special treatment. If you want to be an equal participant in the community, you must not seek special treatment because of your brain injury or your disability. You can, however, express your civil rights by asking for accommodations, whether that is having a ramp installed in your building, asking others to repeat what they are saying so you can write things down, or any other accommodation that increases your participation in the community.
3. Remember we are all more alike than different. Look for common elements rather than differences when figuring out how you can be part of the community or when helping someone else figure this out.
4. Learn to adjust. While a person may be considered a hero for having survived the brain injury, the adjustment to life with a brain injury goes on forever. Once the “hero status” ends, people need to be there to help that person adjust to everyday life.
5. Relationships matter. Often friends who knew the person before his or her brain injury will go away or have their roles change. Those who remain can be cherished as they help the person make new friends and connections based on mutual dreams and desires.
6. Intentionally connect. There are many intentional ways to learn to be connected to the community. Increasing social capital (friends and social networks) starts with expressing what you want to do and with whom you want to do it. Once you have those basics down, start joining groups, classes, or communities who share those common interests. Do you want to bowl? Join a bowling league, figure out how to get to the bowling alley, and be a part of the team.
7. Find a gatekeeper. When you join a new club, church, or other activity group, look for the person who seems to know everyone. Let him or her help you make your way. This person will know not to introduce you as someone who has a disability, but rather as a valued member of the group.
8. Sideline the professionals. Once you transition to the community, brain injury professionals should become your coaches and advisors. They should not be out front telling others about your brain injury or speaking for you. There are no experts in community, only members who want to make a contribution. A great contribution that can be made by those who know something about brain injury is to assist the individuals with brain injury in identifying and securing the accommodations they need and want.
9. Speak for yourself. Individuals who have experienced brain injuries should be encouraged to tell their own stories in the community. Sure, a professional can go to the Rotary Club and tell people what they know about brain injury, but it is far more effective for individuals with brain injury to do so.
10. Decide for yourself. Opinions differ over the value of wearing a medical alert bracelet or carrying a brain injury identification card. For some people, these items are tools that help individuals explain their brain injuries. For others, cards and tags are labels that are used to stigmatize individuals with disabilities. That’s why each person must decide for himself or herself whether or not to use them. It is your choice.

There is a vital role for everyone in supporting people with brain injuries as they adjust to life in the community. Making the paradigm shift – moving from the traditional view of families and professionals being in charge to truly supporting persons with brain injury as they take control of their own lives – is difficult but not impossible. It takes time, empathy, and patience. When we honor the idea that individuals with brain injury must be in charge of every decision and involved in every conversation, independent community living becomes sustainable. Professionals and families can be out front clearing the way for someone to follow, or you they stand next individuals as they make their own way. For true inclusion and participation, individuals with brain injury must lead while community members provide whatever support is needed.

Janet M. Williams, MSW, Ph.D., is founder and president of communityworks, inc and Minds Matter, LLC. She can be reached by telephone at 1-866-429-6757 x101 or via email at janetw@mindsmatterllc.com.

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This article originally appeared in Volume 11, Issue 1 of THE Challenge! published in 2017.