As We Change, What do We Keep?

by Michele Martin on June 16, 2011

There are many good reasons for centers to grow and change. Improved services and supports. Assisting even more people with disabilities to live with independence and dignity. More effective systems change. And, it’s likely that seeking out new ways of doing what we do and securing funding; through new avenues will mean the difference between long term success and failure, especially in a precarious economic time like the one in which we now find ourselves.

As we look forward, it’s also important to remember all the things that are good and right about independent living—the things we absolutely don’t want to lose. Some are obvious, but still incredibly important. Best example: consumer direction. People making decisions about their own lives.

I have one to offer that’s a little less obvious. It’s community. Centers can be a place around which community can form. Centers were and are a place where people can come together to be engaged in a common cause—positive change for ourselves and others. And, as we work together, we build important, lasting bonds with our brothers and sisters. At centers many of us with disabilities found connection with our peers that we never had before. For folks who often are isolated, that can be a big darn deal. That’s not to say that centers need to be the place where people with disabilities come and “hang out.” That’s not necessarily the best strategy for centers, but centers can still be a focal point for community.

Now, with the explosion of social media and Web interactivity, centers can play an even more important—but very different role—in creating community. Community is likely to be very different in the next decade—even in the next few months and couple of years. Just think about how many people are on Facebook, tweeting and following one another’s twitter feeds, writing blogs, engaging in virtual reality, and more. So, this example of community is, I suggest, something we must not lose. At the same time, how we foster and engage with community will likely be far, far different from how we did it in the past.

We’re not going to be the CIL of the 1970s, 1980s, 1990s, or even the 2000s. We may not be the CILs of 2011 very long. Change is coming at us whether we’re ready or not. Even so, we have values and perspectives that have stood us in good stead. If you would like to share your ideas about what we should keep, take a few minutes to write a comment in the comment section on this page.

{ 2 comments… read them below or add one }

Bob Michaels July 3, 2011 at 11:47 pm

When I think about what we want to continue at centers, I keep coming back to the principles that are the roots of our philosophy. Our values, such as consumer control, equal access, community-based services, and advocacy are ageless.

We take consumer control and informed choice for granted, but look how even today we have to fight for the right to run our own programs and for our consumers to have a say in the services that impact them. One thing we have learned over the years is that unless we fight for equal access and our civil rights, no one will hand them over to us.

An often-overlooked principle is our requirement to be community-based. This means more than just having your center be located within the community rather than in some institutional or government setting.

Community-based also means being responsive to the needs of people with disabilities in your community. We should never forget that the staff and board of a center are merely caretakers who eventually move on.

Community-based also means that no person should be institutionalized on the basis of their disability. Centers cannot rest until every person who wants to live in the community does so.

Finally, a center must be the advocacy hub in its community. We need to bring consumers along through our support and firm peer relationships to be strong self advocates and even stronger systems advocates.

So, what about our future? Being a large, multi-faceted center is not for everyone. Maybe that is not what your community needs. While we all must remain committed to our philosophy, large centers have a greater obligation to make sure they are not sacrificing principles for income.

Likewise, we must recognize when our philosophy has been adopted by our partners, we should be willing to step aside and start addressing other deficiencies. There is plenty of work for everyone.


Billy Altom August 18, 2011 at 11:21 am

A quick thought on the future of Independent Living. When viewing disability as a social/political movement, we must always remember that the crux of the IL movement is consumer control. Control over where we live, work and recreate. Particularly where we live. I am and will continue to be a supporter of the emancipation of my brothers and sisters from institutional settings. I would love to see the nursing home industry flip their business model. Stop warehousing people and let the people decide where housing should be. We will still need the services, but they should (and could) be provided in an integrated setting.


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