Further Than Anyone Thought We’d Get

What should we do to help the unexpectedly independent and included?

This has been on my mind lately, partly because of events near me that may bring about greater inclusion. When we get our way, people are liberated. Whether we’re helping people get themselves out of environments like sheltered workshops or addressing the logistical, financial, and legal barriers that can prevent people from making their own decisions, the point is expanding self-determination. That means our victories tend to leave disabled people more free than they may have ever expected to be. Local examples include people who spent most of their adult lives in state institutions before moving to community settings in the last few years and GNETS survivors who will probably be transitioning into real schools within the next few years.

This goes surprisingly well most of the time. The number of people who figure out how to navigate the world with more independence than they were ever prepared to have is a testament to human resilience. However, it doesn’t always work out, and I suspect that it doesn’t usually work out easily even for people who thrive. This isn’t just an issue in extreme situations. It comes up every time young adults defy expectations to go to college in the usual way, living independently, and realize nothing in their backgrounds has prepared them to do their own laundry. The self-directed life presents challenges and requires courage, especially where people were not brought up in ways that prepared them for it. It’s easy to accept the status quo and hand off decision-making to someone else. Being one of the first members of group X to do thing Y, forging one’s own life story, and accepting the consequences of one’s own decisions are harder. We have a responsibility to minimize the learning curve and maximize the odds of success for people willing to embrace the challenges of freedom.

We also have a strategic need for visibly good results. Movements that fall under the broad umbrella of disability rights always face naysayers and lingering, rearguard opposition. Just look at deinstitutionalization. Despite the broken promises of community services, many mental health consumers who would once have been locked up are thriving in their communities. The people who can access care and supports adequate to meet their needs are infinitely better-off. Where consumers are struggling, it is usually because the two-part process of deinstitutionalization- remove person from hospital, provide quality services close to home)- was only half-finished. Unfortunately, the popular narrative isn’t the true story that deinstitutionalization is a great policy left tragically half-finished. Many people think it is just a failed policy, and there is talk of returning to segregated, congregate environments for people with serious mental illness. The lessons here are the necessity of visible success and the likelihood that we won’t have much help to achieve it.

How we pull this off is an essential question for at least my part of the disability rights movement. Most of my work, knowledge, and connections have been in the area of I/DD issues. That is a diverse group of people with a variety of needs and priorities. If I had to take a stab at articulating the top handful for most advocates in that movement, though, it would look something like this:

Helping people transition into adulthood in ways that put them in charge of their own futures;
Real work for real pay;
Real homes across the lifespan, complete with choice in living arrangements and service provision.

For some people and groups, things like voting, access to higher education, and interactions between people with I/DD and the justice system would also be on that list, and real work might be a subheading in a broader agenda of round-the-clock inclusion or financial stability and self-determination. On the horizon, surrounded by growing interest, are things like supported decision-making. This is an oversimplification, and there are countless exceptions and variations, but this is probably where most of us stand.

We’re making exciting progress on many of these issues. Again, that makes me wonder about the problem of success. Every single one of those goals, once achieved, will give a lot of people a lot more control over their lives than they’ve ever had before. In some cases, people with I/DD will be trying to figure out what to do with new freedoms relatively late in life. That kind of change can be empowering, but it can simultaneously be terrifying. How do we help a worker in her late forties who is getting a real job after twenty years in a sheltered workshop have a smooth transition? What are the best practices for encouraging an older person’s growth in formulating and expressing preferences when he’s seventy and hasn’t had much opportunity to do that before? What can a college do, what can peers and instructors do, when a student arrives on a college campus without knowing how to use a washing machine? To the extent that we don’t know, we’re short on time to figure that out. The change we’re working toward will help scores of people become freer than they grew up expecting to be. We need to help them get ready. Real freedom means that people won’t make perfect choices, but we need to be ready to help them figure it out on their own or find the right supports. Disabled adults brave enough to get further than they were expected to go and take on the responsibilities of unexpected independence should have all the support they find useful. Disability rights and disability justice advocates owe them no less.

If you work on this issue or have thoughts on how to address it, I would love to hear what you have to say in the comments.

Originally published at autisticfuture.com on September 1, 2016.

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