... an agency near you, wherever you live in the United States
... a non-profit that can also help families, schools, government agencies, and businesses become better allies of disabled people
... a grassroots movement that combines formidable real-life expertise and personal empathy
... an organization run by and for disabled people?
Someone should definitely get busy and start an organization like that. Wait. They already did.
Centers for Independent Living are not-for-profit disability organizations that are governed and staffed mainly by people with disabilities. They are funded by the federal government, some state governments, and by foundation grants and individual contributions.
Centers for Independent Living are not-for-profit disability organizations that are governed and staffed mainly by people with disabilities. They are funded by the federal government, some state governments, and by foundation grants and individual contributions.
There are CILs in every state and territory in the United States. Some states have a 2 or 3 large centers serving big rural territories or large urban populations. Other states have many more Centers of different sizes serving just a few counties. Each CIL is a independent organization. At the same time, Centers are all part of a loose but extensive nationwide network, operating under a common service model and a common approach to disability.
There are several things that make Centers for Independent Living different from other disability-related agencies:
Majority Disability ... The majority of all Centers' staff and board members are always disabled. This is more than a gesture of inclusiveness, and it is certainly not a practice designed to provide employment opportunities for disabled people. Rather, it is a key to the very nature of every Center's services. Nowhere else can you get disability-related services provided by people who live with disabilities themselves.
Broad Scope ... CILs define disability broadly, and encompass the concerns and needs of all disabled people, regardless of the degree or type of disability they have, or of their age, income, gender, sexual orientation, race, or any other social identity they may have. CILs believe in the essential unity of the disability experience.
Services and Advocacy ... All Centers do both services and advocacy. In fact, the two are interrelated. While providing services, you discover systemic problems that call for policy changes through advocacy. At the same time providing services every day, dealing with peoples' individual problems and goals, helps ground CILs' advocacy efforts in every day reality. Few other disability organizations are as committed to both services and advocacy as CILs.
What CILs Don't Do ... What Centers don't do is also important. CILs do not run residences, group homes, assisted living facilities, special schools, or sheltered workshops. In general, they do not seek to create separate, specialized services for disabled people, but rather work to make existing services accessible and equally satisfying for all, including people with disabilities.
What CILs Don't Do ... What Centers don't do is also important. CILs do not run residences, group homes, assisted living facilities, special schools, or sheltered workshops. In general, they do not seek to create separate, specialized services for disabled people, but rather work to make existing services accessible and equally satisfying for all, including people with disabilities.
I am prejudiced. I worked for 23 years at a Center for Independent Living. For 14 of those years, I was the Executive Director of one. I still do grant-writing work for my local CIL. I still think CILs are as close to being the perfect organization for disabled people and their families.
I also know that CILs aren't perfect. For one thing, with literally hundreds of independently-run Centers operating, they aren't as consistent as one might wish them to be. And CILs do have both strengths and weaknesses. The following is my personal perspective on both:
There is always a risk when you hire people for their life experience more than for their professional credentials. On the one hand, you often find untapped wells of talent, wisdom, and compassion. On the other hand, you may find you have to build up basic administration and collaboration skills, sometimes from scratch. As a result, CILs at times can be a bit shaggy or sloppy with what is broadly termed "professionalism."
Independent Living grew out of a genuine grassroots movement, but was first built mainly on the aspirations of relatively privileged, well-educated, middle-class disabled people. Although there is nothing in Independent Living that is incompatible with other people and goals, it sometimes feels relevant to people with lower incomes, people with cognitive and mental disabilities, and people from more diverse cultural backgrounds.
Weaknesses
The most common complaint I hear from people who try Centers and come away disappinted is that they were unable to help with some very specific, very urgent problem. While Centers usually can get things done in a pinch, they do tend to be better at helping with long-term goals than with emergencies. CILs are not crisis centers.
Centers' struggle for funding can sometimes become a higher priority than their advocacy goals and even their values. It is still quite rare for a Center to "sell out," but it is easy to get distracted off your main mission when money is available to do something that is only semi-related.
Because CILs are so grassroots and rooted in local communities, they can sometimes fail into the trap of wanting to be admired more than wanting to be effective advocates. It's usually possible to be a strong advocate and be well-liked, but it isn't easy. Being considered a respected colleague ... a "team player" by all the other bigwigs in a small community can be awfully tempting.
Because CILs are so grassroots and rooted in local communities, they can sometimes fail into the trap of wanting to be admired more than wanting to be effective advocates. It's usually possible to be a strong advocate and be well-liked, but it isn't easy. Being considered a respected colleague ... a "team player" by all the other bigwigs in a small community can be awfully tempting.
There is always a risk when you hire people for their life experience more than for their professional credentials. On the one hand, you often find untapped wells of talent, wisdom, and compassion. On the other hand, you may find you have to build up basic administration and collaboration skills, sometimes from scratch. As a result, CILs at times can be a bit shaggy or sloppy with what is broadly termed "professionalism."
Independent Living grew out of a genuine grassroots movement, but was first built mainly on the aspirations of relatively privileged, well-educated, middle-class disabled people. Although there is nothing in Independent Living that is incompatible with other people and goals, it sometimes feels relevant to people with lower incomes, people with cognitive and mental disabilities, and people from more diverse cultural backgrounds.
These are not inherent weaknesses. They are inherent risks of weakness. And most Centers are more open to criticism and change from the people they serve than most other non-profits. After all, most of the staff and board members of CILs have had lots of experience dealing with the failings and shortcomings of agencies and services they rely on.
Strengths
Centers have a unique authenticity and credibility because they are staffed and governed mainly by disabled people. The "peer" connection thing doesn't work for everyone, but overall it is remarkably effective. One of the biggest mental barriers for disabled people is believability. They often just don't believe what non-disabled people tell them they can achieve. But when the person telling you has disabilities, too, then the message is just more believable.
Centers provide a structure for organized disability advocacy that can be reproduced anywhere. Independent Living philosophy, service models, and operating principles are firm enough to give structure to a particular approach to disability, and flexible enough to work in any kind of community.
Centers across the country are diverse in their services and activities, but share a common philosophy of disability and operating values. The tools are the same wherever you go, but the goals and priorities vary to fit each community's unique situations.
Centers make fulfillment of each individual’s goals a higher priority than what society says is good for them. This is critical. CILs definitely share a point of view on disability. But part of that point of view is that no ideology should replace what each individual cares about and wants to achieve. CILs are often the one type of institution that will always stand up to support what a disabled person chooses for themselves.
Although CILs aren't there specifically to provide opportunity for the disabled people who work at them, they do constitute a unique and varied career path for disabled people who want to devote themselves to serving the disability community. Plus, Centers are often proving grounds where disabled people with limited work experience can hone their skills and then move on to greater success in other fields of employment.
After two and a half years of disability blogging, I feel like it is finally okay for me to reflect more deeply on Independent Living and actually encourage disabled people and their families to find their nearest CIL and get involved. I am curious to hear feedback on readers' experience with Centers for Independent Living.
Meanwhile, check out these links for more information:
Although CILs aren't there specifically to provide opportunity for the disabled people who work at them, they do constitute a unique and varied career path for disabled people who want to devote themselves to serving the disability community. Plus, Centers are often proving grounds where disabled people with limited work experience can hone their skills and then move on to greater success in other fields of employment.
After two and a half years of disability blogging, I feel like it is finally okay for me to reflect more deeply on Independent Living and actually encourage disabled people and their families to find their nearest CIL and get involved. I am curious to hear feedback on readers' experience with Centers for Independent Living.
Meanwhile, check out these links for more information:
National Council on Independent Living
Directory of Centers for Independent Living
Ed Roberts: Free Wheeling
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