Earlier this week, I was at a conference organized around the idea that people with disabilities can have better lives if they get jobs with real wages. This seems like a truly simple and true assertion, but also like anything that seems simple and true the idea is fraught with complications because, well, it's people. You just can't make assertions like that without considering history, perceptions, experiences... And you can't really assert anything for sure when talking about "people with disabilities" anyway. That's a category, not actual people, when you get down to it. Actual "people with disabilities" are individuals with all kinds of different needs, talents, interests, brilliances, predilections, shortcomings, etc. In short it's hard to make something concrete out of something so abstract.
But maybe you have to.
The conference gathered together all kinds of folks, from people with disabilities (all kinds of disabilities, developmental, physical, and so on) to their families, from social workers to business people. There was an energy in the air; maybe I'm making that up, but still... It felt electric somehow, and serious, and everyone was paying attention to what's currently going on. Supported Employment for people with disabilities is not a new idea of course, but this time we don't have the luxury of maintaining the status quo while pontificating and talking about "change." We have to make it happen. Medicaid rules are changing, and Medicaid funds the majority of supports for people with disabilities. The changes are about prioritizing toward helping people have as much independence and equality as possible. The rules changes come from all kinds of places within the federal government, not just Medicaid (Department of Justice and Department of Labor are in on it too, which makes sense, because the issue isn't really about social programs as much as civil rights and labor rights: 95% of people who don't make minimum wage on their jobs are actually people who go to sheltered workshops), so it's really hard to ignore.
This time it's top down in ways it's never been. And on the ground are large programs/buildings/workshops that have been doing business for decades in ways that the Feds are now calling unfair and possibly illegal.
What does this mean?
It means maybe we who have jobs supporting people with disabilities, especially those with developmental disabilities, have been looking at the situation through the wrong set of eyes. We often see issues for the people we support as programmatic. How can we alter programs to help people? But actually we should be looking at not the programs, but the results (the "outcomes" in government-speak) of those programs. And the results just aren't that great; in fact they have kept a lot of people in situations they could possibly break away from, if only the programs they are in were in question. In other words, the question should be, "What is happening in this person's life? Is he/she getting what he/she needs to be successful?" As opposed to the question we usually ask, "What program does he/she need to be referred to?"
Ronald Reagan (I know a lot of people will probably not like me quoting the Gipper, but what the hell?) once said, "The best social program is a real job." And even though it's hyper-complicated to make results/outcomes happen, that's basically what we are talking about here: how do we help people make a living wage? How do we help people secure success (without the program getting in the way)? How do we support people to be the best people they can be?
For better or for worse, this process of being the best you can be often has its foundation in what people do for a living. And if you take that possibility out of the picture, you often are grasping at straws. I've met a majority of my friends through work. A majority of my identity as a person is informed solely by my job. I've spent 36 of my 49 years working in restaurants, libraries, group-homes, etc. Yup. I started at 13, riding my jankety moped to the Irish Point Restaurant in Pendleton, Indiana so I could be a car-hop and grill-cook. After that I moved on to Kentucky Fried Chicken, Rax Roast Beef, Ponderosa Steakhouse, and so on. I developed a work ethic through the process. I think I may have learned more real lessons at all those jobs than anything I ever learned in school and college because it's all about putting yourself in the middle of things, being "in" the moment, and understanding you are a part of the world that is needed, that you have responsibilities and you are counted on.
By blocking entrance into this sense of responsibility, through programs, through good intentions, we who are trying to help people with disabilities are just plain hindering them. We've been doing this for, well, since we figured out we needed to be helping. We've constructed large programs and facilities that are about "training" people, but the training has gone on for decades without any results. We're good at wanting to help. Not so good at actually doing it.
So now there's a shift. And I'm hoping it's for real. I have a feeling it is. Because at the end of the day the reason I chose this line of work is to not be a part of a program, but a part of a movement. That sounds lofty as all get out, reminiscent of hippie BS, but it's true. I don't have a lot of school spirit, never have, what pushes me forward is making stuff happen: results. I think that's true of a lot of social-worker-types, and we just get so caught up in the programs we make, funding them, going through certifications and audits for them, that we forget sometimes what they are there for.
Anyway, that conference earlier this week truly made me feel like we're on our way toward something, as opposed to on our way to protecting what's already been done. There may be people with disabilities who can't have real jobs, or maybe who don't want to have them, and that's okay. What is exciting is that from now on, I think, I hope, the assumption is people can work and have lives and pay taxes and have beers with their buddies after work. They can be"equal" in one of the truest ways to be equal: as necessary contributors in getting things done.
Which brings me to Raymond Thunder-Sky.
That's one of his drawings up there. (Many more can be seen at www.raymondthundersky.org.) Having a real job was Raymond's obsession, and he had a few (and also worked for a long time in sheltered workshops), did well at everything he tried, but the job that he truly craved, being a part of a construction crew, eluded him because he couldn't get a driver's license (that's one of the major prerequisites to being on a crew). So he created a job for himself: he began drawing sites, setting up shop on the periphery of demolition and construction sites with a toolbox filled with markers and paper. He became a ghost-worker in many ways, sublimating his desire for an actual gig with what he could actually do. I'm thinking, in the climate of today, he may have been able, somewhere along the line, to get a license with some help. With some persistence from both himself and his supporters he may have been able to at least try to have that career. Maybe he would be both a participant in the real world, and an artist commenting and documenting his participation in it.
Anyway you look at it, this is an ongoing saga... I hope, I truly hope, this time there are actual results.