I became the Executive Director of the newly created Center for Independent Living (CIL) for the Baltimore Metro area in December of 2010. No phones, no desks, no office, no employees.
Many people have asked me why I gave up a good State job that paid more, had retirement and job security, to run a CIL?
It’s a fair question that deserves a thoughtful answer.
For most of my career I have been frustrated by being in an environment where mostly nondisabled professionals were in charge of service delivery to people with disabilities. Although I spent much of my career in private business, I also worked as a contractor and an employee of many disability agencies. I always felt like I was speaking a different language than they were. They used the words of inclusion and empowerment and said disabled instead of handicapped, mobility impaired instead of crippled, Etc., but had no concept, at their core, what the heck they were talking about. Mostly they were people who wanted to provide care, but not “empower.” Their university training gave them a degree but no real sense of how to engage in a collaborative process with people who had disabilities.
Since these professionals aren’t helped to understand, at a feeling level, the experience of disability, they teach skills, when the real core of disability is not about skills, but about belief in one’s self. Knowing how to do something doesn’t mean you believe you can do it as well as a nondisabled person. Knowing how to cook doesn’t mean you see yourself cooking in a restaurant or cooking for your kids. Seeing somebody with your disability doesn’t mean you believe you too can do it. The few competent people with disabilities that the agency knew were the exception rather than the rule and agencies didn’t believe that the exceptions would, or could, ever become the rule! In few agencies were competent people with disabilities ever in charge and even if they became directors or program managers, they weren’t given the power to make real change in the agencies fundamental approach. In most State programs, the staff you have are the staff you have, and that’s that!
In the agencies I worked in, (and it’s still mostly true today), when tables needed to be moved, the nondisabled people moved them. When the food needed to be cooked, the nondisabled people cooked it. It’s easier, it’s faster, it’s simpler. And, often, we didn’t know how to do it as well as the nondisabled, so, who were we to disagree. Simply by virtue of being disabled, we didn’t have all the answers. The fundamental point is that rather than creating an environment of exploration and new understandings, we simply perpetuated a lot of the old ones with a little improvement around the edges.
A CIL is fundamentally different than anything I’ve ever done accept for grass roots activities with the National Federation of the Blind (NFB). The National Federation of the Blind is a national civil rights organization run by the blind. When I joined NFB in the 70’s, it was transformational. In an NFB activity there was no over-helping. Tables needed to be moved–blind people moved them. Food needed prepared–blind people prepared it. It was just a different world than the one I was used to. The expectations were high and competency was assumed. And, I suddenly realized that some people, whether blind or sighted, really “got it.” I found myself relaxing in ways that I never had before, because I wasn’t always trying to figure out how to deal with the attitudes of those around me.
So, for me, when the idea of running a CIL came up, it was a choice. I could either keep working in environments where, at best, I was a small minority, or, I could finally be part of an environment in which people with disabilities were in charge of their future, with all that that implies. In a CIL, we, people with disabilities and those without disabilities who join us, will either make it or we won’t, but we won’t be able to blame anyone for failure but ourselves.
Lest anyone think we’ve created the perfect environment, I would say that maintaining the CIL environment is challenging. Like the general population, we have absorbed the attitudes of others about our own disabilities and the disabilities of others. Just because I understand the experience of being blind doesn’t mean that I can easily transfer that experience over to being hearing impaired or in a wheelchair. I can easily, if I’m not careful, over-help or make unwarranted assumptions. The CIL environment is an on-going conversation about the possibilities of disability rather than the limitations. The challenge for a CIL is to keep this conversation and learning environment going so the misunderstandings can be recognized. Otherwise we can become part of the problem rather than the solution.
When the staffs of a CIL are mostly competent people with disabilities who understand the pains, challenges and joys of disability, the air just tastes different. Everybody, disabled and nondisabled, comes with a set of shared experiences that make a CIL truly different from most agencies. In part it is that they understand the pain of daily discrimination and lack of inclusion. They understand being regarded as less than an optimal parent, lover, father or mother. They understand the pitying looks and the attempts to hide them. They understand when they’re being used as a token to “show off” the person with a disability. They understand that “being amazing” isn’t really a compliment. What it means is that, “You’re normal, doing normal things, and I expected you to be incompetent, so when you do normal things, you’re amazing!”
When we send out job announcements we ask people to answer a question: “Describe a life crisis, major obstacle or personal limitation you have faced and how you managed it. If there are teachable lessons others can learn from your experience, how would you teach them?
We’re looking for people who know the pain of being different, experiencing loss and overcoming personal limitation. People without disabilities who have managed crisis in their lives make wonderful partners in our center because, although they don’t have disabilities, they know the shared pain of rejection, the pain of being regarded as an object or the adjustment necessary when your life is dramatically changed.
I love this work. Is it difficult to find qualified people to work for the CIL? Yes. It’s a hard-to-find person that we need. Our employees not only have to “get it” about disability, but they have to be competent with their own disability. They have to be competent professionals who drive themselves to do the work and document it. They have to know lots of things about lots of disabilities that aren’t necessarily their own. They have to have a certain attitude about their disability that says, “I can manage this, and you can manage your disability too.” They can’t have chips on their shoulders but neither do they need to passively allow others to treat them like four year olds. I guess you could call it being a fighter with a smile. Or, maybe sometimes not.
Developing a CIL is about empowering and helping consumers. Is it difficult to know when you’re empowering consumers and when you’re doing too much? Yes. Anyone who tells me that they’ve got it figured out is lying or delusional. Far too many CILS are small, struggling agencies awaiting a leader who “gets it” and also has the requisite management and organizational skills. But, I’m proud to be in a country that understands that it’s worth doing even though that means accepting some failure as the price of progress. I think far too much is made of CILs that fail. It comes with the territory. Take a population that has little experience of being in charge, of having few expectations for themselves or from others, and you get a lot of false steps which we too quickly regard as failures. Every minority must pass through this process on to true integration and high expectations.
CILs are far more than service providers. It’s hard to integrate the “service provision mentality” with the “philosophical empowerment mentality.” For example, we have employees working at Baltimore City, Baltimore County and Harford County at the Aging and Disability Resource Centers, (ADRC’s). These are some of the most difficult jobs we have. We’re asking our staff to go into environments that have focused on care for the elderly and have little or no knowledge of helping people take charge of their lives.
We’re asking our employees to be examples of that empowerment philosophy, knowing that they are outnumbered, in some cases, a hundred to one, and knowing that they are under the microscope, being regarded as the example. That’s a tall order and an often painful one for them. It’s not just about doing Information and Referral and doing options counseling. If that’s all we do, these agencies really don’t need us. Our job is to transform a system that has been the way it has been for quite some time and to learn from that system as well, understanding that they too have lessons to teach us about the difference between delivering services to people who are ending life and those who are beginning new lives. Ideally, it’s a trading of experiences. Aging services have always seen themselves as in the business of care-giving while we see ourselves in the business of empowerment. Aging systems tend to be risk averse—keeping things safe, while we see ourselves as allowing for choice and acceptance of risk.
Fortunately, there are good people in the aging system and people who want to “get it.” And there is the federal push to make this happen because the aging and medical systems are finally coming to understand that helping people make decisions and take charge of their lives makes sense both philosophically and financially. And, they’re being told by their State and Federal bosses to look to the CILS for the example of what it can become. And, it’s our job to be that example, no matter how difficult the challenges.
I say all of this to help you see into the CIL world. People use the term “independent living movement” and frankly don’t understand what it means. A movement like the civil rights movements for African-Americans, gays, or women, has a flavor when it’s real and people respond to it. We have much in common with immigrants–The Irish, Italians, and more recently, the Hispanics because they have all struggled in ways similar to ours. Just like each one of these groups, we learn who we are and others come to accept us. The road to full equality is long and generations to come will judge our progress far better than those of us who toil, not knowing the results. You and I don’t judge the Irish as inferiors because those battles were fought and won long ago. Someday, disability will be one of those long forgotten battles. For now, we look, seeing the short term struggles as the entire battle. But really, we are changing the long-term definition of disability for everyone.
There’s certain energy in a CIL that makes it all worthwhile. We have gone from no employees to ten over the past three years. We have a very unique staff–A little person (she’s three foot three), people in wheelchairs, people with invisible disabilities, people who are blind, hearing impaired, people of different racial backgrounds, and, yes, we even have people without disabilities, but they truly “get it.” Bring all these different racial and disability differences together and it is truly transformational.
People say, “You’re really lucky to have such a perfect job.” Yes, I suppose so, but then again, I mean something different than they do. What I mean by the perfect job is that I get to be around wonderfully creative people every day and that, twenty percent of the time I get to spend on wonderfully creative activities. The other eighty percent of the time is spent doing the daily chores of management—budgeting, writing grants and monitoring them, checking over bills, reviewing State and Federal regulations, reviewing nonprofit laws, —in other words, even the perfect job is mostly taking care of the daily boring business of the CIL that keeps the doors open.
For me, with all the paperwork and frustration, it’s the most exciting thing I’ve ever done. I’m hopeful that we will continue to grow into being a real CIL, not just a service delivery system but a place where the disability and professional community come for growth and empowerment. It’s not just an office we’re trying to build, or a service delivery staff, but, a positive empowering environment made of people who “get it.”
I want to thank all who came before me who made this possible and to thank my employees, who daily do the work of creating a better future for us all.