Breaking Ground 92 - What Independent Living Is (and is not)

When people ask me about my new job at Empower TN, the Center for Independent Living in Middle Tennessee, they almost always say, “is it a nice place to live?” And I say, “well, it’s an office with a lot of desks and phones and computers and not very cozy”. All kidding aside, Independent Living can mean a lot of things, depending on the context in which it is being used. It can be a thing… it can be a place… it can be an attitude… it can be a service that you get from a provider agency, but at its core it all boils down to one thing: not letting a disability or difference in how we live our life prevent us from making our own life choices.

When I came to Empower TN last month I completed a professional and personal journey that began way back when I was four years old in Rhode Island. I was in a car accident that left me paralyzed from the waist down and reliant on using a wheelchair to get around for the rest of my life. That journey took me through elementary, middle and high school and on to college where I got my Bachelor’s degree.

I started working in the field of disability services back in 1993 at a Center for Independent Living in Rhode Island, where I discovered that I could use my own personal experience as a person with a disability to help others who were experiencing what I had experienced in my own life. After a while I decided that I wanted to help even more people on an even larger scale so I got my Master’s degree and worked at a rehabilitation hospital and then for Medicaid in Rhode Island where I could help design whole programs to provide services to those people who needed help and support to achieve their goals. That eventually lead me here to Tennessee where I worked for TennCare, helping to transform how things are done so that people with disabilities have the same opportunities as everyone else to achieve whatever life goals they may have.

I came to realize that while Medicaid and the services they provide are important to promote and maintain independence, there is more to the picture, so I came back to my personal and professional roots by accepting a position as programs director at Empower TN, one of six federally funded and designated Centers for Independent Living (or CILs) in Tennessee.

Here’s where a little history might be helpful. During the process of closing big institutions for persons with disabilities in the 1960s, some people with significant disabilities were released from nursing homes and other institutional settings, enabling many, for the very first time, to live free and independent lives. This created the birth of a community, a culture and a movement.

This movement came about at the same time other major civil rights movements were taking place. Leaders of the disability community realized that their basic human rights and freedoms might have to be advocated and even fought for too. Although attitudes and services have improved greatly, much remains to be advocated for.

So what is a CIL and what does a CIL do? Well first of all, it is NOT a place to live (that’s an assisted living center). A CIL is an organization run and staffed by people with disabilities. In fact, in order to maintain its federal funding and designation, a CIL is required to have more than half of its board of directors and half of its program staff be made up of people with disabilities. Why is that important, you may ask? Well, who knows what a person with a disability is dealing with better than another person with a disability? Learning from other peers with disabilities is a powerful and lasting way of acquiring new information and promoting independence.

The  primary role of CILS is to provide five core independent living services, which are; Independent Living Skills Training, Advocacy, Peer Support, Information and Referral, and Transition Assistance, which involves working with individuals who are entering or re-entering the community from an institutional setting, as well as high school students transitioning to adulthood. At Empower TN we also provide additional services to help people with disabilities manage their Social Security disability benefits while returning to work through the Work Incentives Planning and Assistance (WIPA) program, and assist them in preparing for and finding a job through our Employment Network program.

One of the most important things that anyone needs to know about Empower TN and CILs in general is that we don’t do things FOR you, we do things WITH you. That means we partner up with you to find out what your goals are and what we can do to help you reach them. We help you figure out what needs to be done to reach your goals and will work with you through the entire process doing as much (or as little) as you need. But don’t expect us to do it all - that’s what makes us different. You see, as people with disabilities ourselves, we understand how valuable and rewarding doing things for ourselves can be. There is no better feeling in the world than to set a goal for yourself, work hard at it and then accomplish it. That’s what independent living is all about.

So if you want to increase your independence in any way - like learning how to use technology to access a computer or iPad if you are blind; knowing how to plan meals, shop and cook your own food; finding affordable accessible housing; or just connecting with a peer who has the same things happening in their life as you do so you can bounce ideas off of each other, CILs like Empower TN are the place to go.

For more information about Empower TN check out our website www.empowertn.org. If you live outside of the metro Nashville area and you want to find the CIL closest to you, visit the Statewide Independent Living Council’s website.