The Dignity of Risk

     About the Authorjanetblog[1]

Janet Shouse is a parent of a young adult with autism, and she is passionate about inclusion, employment of people with disabilities, medical issues related to developmental disabilities, supports and services, public policy, legislative initiatives, advocacy, and the intersection of faith and disability. She wears many hats at the Vanderbilt Kennedy Center, including one as a disability employment specialist for TennesseeWorks.

Our hope is that this weekly blog will offer information you want to know, so if you have a question you want answered about employment for people with disabilities or other mysteries of the world of work, please email me at janet.shouse@vanderbilt.edu.

By Janet Shouse

“To deny the right to make choices in an effort to protect the person with disabilities from risk is to diminish their human dignity.”

-Robert Perske
Long-time advocate for people with intellectual disabilities

 The dignity of risk is an idea that I encountered when my son with autism was in elementary school. The dignity of risk is the right to take risks when engaging in life experiences, and the right to fail in those activities.

I think all of us who are parents want to protect our children from physical harm as well as emotional harm, and that’s true whether our child has a disability or not. But most of us realize as our children begin to grow up, it’s not always possible to protect them.

If our children decide they want to ride a bicycle, chances are, at some point, they will skin a knee or scrape an elbow. If, as they grow older, they have a girlfriend or a boyfriend, generally someone ends up with a heartache. As a parent, we can’t prevent that heartache.

But for those of us who have children with disabilities, even adult sons or daughters with disabilities, we often want to continue to protect them, keep them safe, take care of them and watch over them. We may, however, severely limit their ability to make choices, to risk failure, and to grow.

Some of those risks may revolve around employment and living independently. For many parents, their ideas of jobs their son or daughter can do may not match what that son or daughter wants to do. Are you willing to let your youth or young adult choose a job he or she thinks might be fun and interesting? Even if there might be risks? Finding the right job match may take some creativity on everyone’s part.

For instance, a friend thought medical coding sounded like a wonderful job for her son, since he liked computers and medical coding is a skill that is in demand. So she arranged for him to attend a nearby community college to learn medical coding. He never finished the course because he had no desire to do medical coding. And they had not really discussed what he did want. When they talked, she learned he wants to work in a theater, helping with plays or music performances. So far, they have not worked anything out, but they know what they’re looking for now.

And don’t rule out the possibility of self-employment. For many individuals, that can be a rewarding career. Such efforts have included baking, making dog treats, creating works of art or designing mugs and T-shirts.

Then comes the issue of housing. The question of where the person with disabilities is going to live is often answered immediately by parents saying, “With me!” But what if that is not what your son or daughter wants? I realize there are many barriers facing families whose son or daughter wants to live away from mom and/or dad, including housing costs and the costs of someone to provide some level of supervision, but have you explored creative possibilities?

I know of a couple of instances where parents arranged for their sons to live in fraternity houses, since the young men were college-age, and that’s a place for college-age men to live. (And there was some level of supervision.)

There is a group in Nashville called the Nashville IDD Housing Group, which is looking for creative ways to help young adults with disabilities live independently in the community. Check out the group’s website. If your community has a similar group, please let me know.

One example that brought home to me the concept of the dignity of risk occurred several years ago, when a young man was walking home to his apartment from his job. A car veered off the road, striking and killing him. This was a young man with an intellectual disability. I knew that he was working and living with a roommate because that’s what he wanted to do. A friend said to me that if he’d been living at home with his mom and dad, where she thought he should have been that would have never happened. Maybe. Maybe not. But didn’t he have the same right to be walking along that street as any of us?

The dignity of risk is closely connected to the notion of self-determination, and the U.S. Developmental Disabilities Act outlines self-determination as individuals with developmental disabilities, with appropriate assistance, having:

  • the ability and opportunity to communicate and make personal decisions;
  • the ability and opportunity to communicate choices and exercise control over the type and intensity of services, supports, and other assistance the individuals receive;
  • the authority to control resources to obtain needed services, supports, and other assistance;
  • opportunities to participate in, and contribute to, their communities; and
  • support, including financial support, to advocate for themselves and others, to develop leadership skills, through training in self-advocacy, to participate in coalitions, to educate policymakers, and to play a role in the development of public policies that affect individuals with developmental disabilities.

And Congress finds that:

“Disability is a natural part of the human experience that does not diminish the right of individuals with developmental disabilities to live independently, to exert control and choice over their own lives, and to fully participate in and contribute to their communities through full integration and inclusion in the economic, political, social, cultural, and educational mainstream of United States society…”

You may find some useful information in this guide on Supporting Adults with IDD in Their Communities.

I would invite you, readers, to share with me ways that you are encouraging your son or daughter to enjoy the dignity of risk and greater self-determination. You can leave your comments below or email me at janet.shouse@vanderbilt.edu.

I’ll leave you with one final thought.

“Freedom to make choices, even choices that may result in harm, is a freedom that most people cherish. Freedom of choice is one of the highest American ideals.”

-Burton Blatt

Advocate of deinstitutionalization and inclusive education