Desegregating the disabled

For many of us, especially those born after the 1960s, the word segregation conjures up grainy images of police dogs being sicced on civil-rights marchers, and signs declaring drinking fountains and restrooms available for “whites only”—murky, bad old days that, by and large, are in the past.

But, until just recently, another kind of segregation has been very much the norm for people with developmental disabilities. That’s starting to change, slowly and quietly, thanks to the efforts of people like Diana DeRodeff, executive director of In Alliance.

Talk about how In Alliance got started and what its original mission was.

Well, we’re celebrating our 50th anniversary. Parents got together 50 years ago, when there were no services for people with disabilities. Many people were in state hospitals, or their families kept them, you know, in a back bedroom or in the home with them, trying to do the best they could to take care of them. Parents in those days, all throughout the state, organized activities for adults [with developmental disabilities] to do. Here, about 13 parents got together and, with volunteers, built the first piece of this building here. And they would bring work in. They used to put plastic wrap on top of bakery boxes, for example.

This was what you call a “sheltered workshop?”

Right. It still exists today. People with disabilities are brought together to a place, and work is brought to them to do. And they are paid to do that work. When I came in 1984, that’s pretty much what was happening here. But I talked to the staff about what the mission of the agency was: What are we really supposed to be doing for people? And, as we began to actually talk to the people with disabilities who were here, it became evident to me that people really wanted to be part of their community. They wanted to be seen like the neighbor, not like the disabled neighbor. When you really talked to them, they always looked beyond the fence, wondering, “What are other adults getting out of life that we don’t have here?”

They understood that they had been put away. So, we decided just to shut that down. In 1990, we closed the sheltered workshop and began to build an entirely different service.

The sheltered workshops still exist …

Yeah. They are a lot more sophisticated now. I think there are still probably more people in sheltered workshops. It might be 50-50 here in California. But there’s a lot of pressure not to do that anymore. The kids coming out of school today have been “mainstreamed” for the most part, so they have been able to participate in regular school. And they want that when they come out. I believe we were the first agency in California to shut down the sheltered workshop and move to a fully integrated employment.

And how is that done?

We do job placement and job coaching. Most of our services are related to work, to getting people working in the community at whatever capacity they do. We do have people with very severe disabilities, people in wheelchairs, people who have no language. Those folks require one-on-one supervision. They have a job coach who probably picks them up at home and then stays with them at work. Then, we have folks who we help get a job. For example, we have a guy who works at Raley’s who has been there about 12 years I think. He had a job coach who helped him get a job, showed him how to do it and came in a couple of times to support him.

A lot of the folks you work with could just get government support, SSI. Why work?

It’s just the sense of people wanting to be valued in the community that they live in. Sure, I’d like to not work for a while. But our culture values people working. The first thing we often ask in a social situation is, “Where do you work?” So, the value on work is astounding. The other part of that is what do you do if you don’t work? What are your social interactions? What we’ve found is that people get pretty lonely and socially isolated if they are not working or at least volunteering.

What do the rest of us get out of it?

Well, they are now taxpayers. It makes people responsible for work. Most of our people do get SSI. As they work and earn money, their SSI goes down.

The other thing, I think, is that segregation breeds fear. When I grew up, I was never around people with disabilities. I think there was one deaf kid who lived down the street, and we all walked around her house because we were afraid of her.

What I’ve found is that people are now interacting [with disabled people] all of the time. I think the whole community is less fearful of people with disabilities. For me, that’s a great thing. We’ve just found people a lot more accepting; people are more at ease. We have people who have been at their jobs for years, and the customers know them, and they know the customers, and they say, “Hi. How’re you doing?” In 1984, that never happened.