Part of a Whole

My name is Nicolas Steenhout.
I speak, train, and consult about inclusion, accessibility and disability.

Are independent living centers just glorified sheltered workshops?

This question has been rolling around in my head for a while now. And I must admit I am frightened by the answer.

I am not accusing any particular center of being a sheltered workshop — I’m just pointing out what I feel is a growing a trend. Perhaps it has gone farther than a trend. Maybe it’s become reality throughout the country.

Until recently I was the executive director of an independent living center. These centers are supposed to be a rebellion against professional domination, professional so-called "experts," professional paternalism and condescension, it’s true. But that’s no reason for our centers to be excused from professional standards of quality. If we want to be taken seriously, we have to behave in a professional manner.

Often we centers make excuses for ourselves. "We don’t have enough funding to have high-quality business cards or brochures." "Our offices look shabby, but it’s OK, because we’re a grassroots organization." This line of thinking seems to extend to the performance level of employees as well.

This is the first similarity with sheltered workshops.

When I contact centers throughout the country I am often appalled at the level of service I receive — little things like messages not being passed on, phone calls not being returned. When staff members don’t have the information I need they don’t offer to hunt for it — or, worse, they simply give me incorrect information. I could list several other examples, but these are probably sufficient. Take a serious look at the centers you frequent. Do you see signs of what I’m talking about?

As center administrators, we are often stuck: we look for employees but get no applicants who seem competent. We find ourselves in a difficult situation: We want to staff our centers with people who have disabilities — after all, what makes us different from other social service organizations, we say, is that we are operated by and for people with disabilities. Who better than folks with disabilities to know what we need, right? Yet we find the pickings are slim.

Few competent applicants apply. Even fewer of these are people with disabilities. Some of these applicants with disabilities may be able to do the job — with extensive training. Others may able to with training and assistive technology and/or job accommodations. Still other applicants are simply not ready to work. This is likely not the applicant’s fault — but the fact remains that employing people without at least some skills and/or training is problematic.

So we create (or shape) a job to fit the applicant’s ability. This happens everywhere, and not just with people with disabilities. Yet I see it happen too much within independent living centers, where often the position ends up being a completely different one than what the center needs. The person hired doesn’t have the needed skills or competency, so the job is changed to suit the applicant.

Doing this kind of job creation to fit the applicant is known in other sectors as "supported employment." This is a second way in which independent living centers resemble sheltered workshops.

Some types of accommodation seem easier to provide than others. We’re happy to adjust the height of a table for a wheelchair user to fit under it, less keen on developing a policy to protect employees (and consumers) with multiple chemical sensitivities. We’ll buy screen reading software for someone with a vision disability, but won’t provide the same software to someone who sees "just fine," but can’t mentally process the written word.

So it ends up there’s a narrow range of disability types that we can — or will — accommodate. Having just a few predominant "types" of disability among the staff is yet a third similarity to sheltered workshops.

What about center directors who themselves don’t have disabilities? I know many who are excellent at what they do. They mostly "get" the independent living philosophy — perhaps better than some center directors who have disabilities. But nondisabled directors should want to see someone with a disability take their job eventually. Some have admitted to me that they don’t feel comfortable in their position; that they feel the director should have a disability. But there was nobody else able and available to do the job, they say.

While a non-disabled director can do a good job at an independent living center, their presence gives out the wrong public message: "People with disabilities are so helpless that even their wunderkind organizations are led by people without disabilities." That’s the message the center’s clients will get as well.

We push and prompt our consumers. We tell them they can do what they set out to do. Yet in the end it seems to them all a sham, because even at the center it’s the non-disabled director telling them how to lead their lives. Of course it could happen that the "nondisabled" director’s disability is a so-called "non-visible" one . What’s the solution to that?

It’s understandable why a center’s board of directors might hire someone nondisabled to be its executive director. It’s hard finding someone able to do frontline, direct-service work, who understands the independent living philosophy, who can handle the administrative side of running an organization. Finding such a person who also has a disability can be extremely difficult.

To some, a job at an independent living center is not a "real" job. John Hockenberry in his book Moving Violations talks about "crip jobs vs. real jobs." Have we become the job of choice only for those of us who can’t cut it in the workforce? A place to work only when other employers won’t hire us, or accommodate us?

Do we force center employees into the ranks of the working poor because of low pay scales? We all know that if you work in the non-profit sector, you won’t make much money, but that should not be an excuse for a center to pay barely living wages, or to offer only flimsy benefits, or none at all. Yet another similarity with sheltered workshops.

Of course, unlike sheltered workshops, independent living centers aren’t making profits on the backs of their employees. And in some cases low wages are essential: center staff who are on Medicaid will lose Medicaid’s health benefits unless they remain "poor." Of course, staff wouldn’t need to remain on Medicaid if the center truly paid decent wages, with decent benefits.

But our independent living centers need to work much harder at helping our consumers become ready for the workforce, including our workforce. We need to provide extensive training to both consumers and staff. Of course we may need to "de-program" them first. They need to understand, in their inner core, that they have a right to be employed. They also must understand that along with that right comes the responsibility to be competent at the job they are doing. As an employer, it is a center’s responsibility to call them to task when they are not performing adequately, and to work toward figuring out what the issues are.

Independent living centers began in the spirit of fighting bureaucracy, yet many of us in today’s centers have become that bureaucracy. So what are we to do? We have to start a revolution, rekindle a fire that has cooled down.

But in talking to center administrators, one quickly realizes that many of us fear that "bucking the system" is going to jeopardize the little funding we get. For the sake of getting a pittance, we remain silent. We can barely hear our voice. Yet we should be roaring like lions.

We talk about disability culture and pride. I am proud of who and what I am, of what I do, but I don’t see that pride in many independent living center employees across the nation — that is, I don’t see it enough. One often gets the feeling from staffers that they are there only for the paycheck, measly though it is.

It’s easy to get discouraged when you fight the same battle day after day and don’t see any change. People lose sight of the meaning of their work; perhaps their work has in fact become meaningless — yet another similarity with sheltered workshops.

I would like to think of independent living centers as safe havens for people with disabilities, places to get away from the troubles encountered in society at large. An independent living center should be a place where you meet other people with disabilities, where you can share your experiences and learn what works for others. But if you go to a center where the employees themselves don’t believe in what they do, how can they help you with your life and attitude?

"To save a drowning man, one must first know how to swim," counsels the Chinese proverb. Before we can truly effect change around us, we have to rethink who we are, what we are, and how we provide services. These changes have got to come from within. They won’t be easy.

But come they must.

Originally published in Ragged Edge.