Autistic Future
September 1st, 2016

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.