CILs are an Untapped Resource

Author: Jerry Crum – January 5th, 1994

Chronic illness brings with it a multitude of challenges. This is not exactly news to those of us whose lives have been affected by Chronic Fatigue Immune Dysfunction Syndrome (CFIDS).

We need help, but where do we turn? Perhaps one place you should think about is an independent living center (ILC).

I became aware of ILCs through my friend, Jim. We had gotten to know each other through a mutual hobby, amateur radio. I will never forget the day I met him face-to-face; until then, I had only talked with him over the radio. I couldn’t believe it — he was in a wheelchair! I remember thinking to myself, “Gee, he doesn’t sound disabled…”

Over time, Jim and I became good friends. He told me he had been injured in a swimming accident. Every once in awhile, he talked about a place called “the living center.” I could tell it was important in his life.

Jim remained my friend after I came down with CFIDS. He’s been one of my best cheerleaders. One day when we were visiting, he asked me if I felt like I could be doing some volunteer work. He told me our local independent living center was looking for people to answer the phones. It sounded interesting, and I asked him to tell me more.

He said the center was one of hundreds of ILCs located around the country. He explained that ILCs offer a wide variety of services to people with all types of disabilities. He also told me, with obvious pride, there was substantial involvement of people with disabilities in the making of policy, the delivery of services, and the day-to-day running of the organization. I liked the idea, and started volunteering.

As I became familiar with the center, I came to realize that many of the services it offered would be useful to people with CFIDS (PWCs).

For PWCs, probably one the most important types of assistance available through a center is information and referral.

Information and referral:

One of the most frustrating things I’ve found for people who are newly disabled, other than the disability itself, is trying to find what services exist for them within their community. ILCs are up on this information — they deal with it everyday. One call to a center will put you in touch with someone who is familiar with resources available to you within your community.
Other services centers provide:

Peer counseling:

I can’t say enough about this. Examining and solving problems with people who have disabilities other than CFIDS has made me realize that many of our needs are not unique. It gives pause to see how similar some of my symptoms are to people who have had a stroke or have suffered a head injury. Many of their frustrations are my frustrations. I understand them, they understand me. And we work to help each other.

Advocacy:

Centers provide two kinds:
Consumer advocacy; this involves working with staff to obtain support services available to you from other agencies within your community and Community advocacy; which involves staff, board members, and volunteers working to initiate change within the community to make it possible for people with disabilities to live more independently.

A host of other services are available at ILCs, and they can vary depending on the needs of the people they are serving, and the resources available within the community.

I believe ILC’s offer opportunity for people with CFIDS. Potentially, there is a lot of help available for us if we avail ourselves. At the same time, we must understand we are a relatively new disability and that we must give centers the means to understand the challenges that face us.