Archives 2015

If you are unfamiliar with the term “ableism”, it is a word, much like racism, that describes a societal condition that leads to the widespread discrimination and segregation, but in this case focused on those with a disability label.

If ableism describes the culture that subjects people with disabilities to rejection, how do we analyze a service system that tries to help people, but in doing so, ends up reinforcing ablistic values of the culture? This is something I call “benevolent ableism.” when well-meaning people set up programs or services that also segregate or send messages of stigma due to using disability as the defining core of the services, rather than such things as individualism, quality of life, informed choice, and inclusion.

Historically, we have seen benevolent ableism in the development of sheltered workshops, group homes, and day activity programs, which were touted as the alternatives to institutionalization, which itself was considered a benevolent service of its time. Unfortunately, all these models, while offering an option instead of something worse, still kept people from experiencing the kind of life they deserve.

The challenge of benevolent ableism is that those who perpetuate it are well-meaning, caring folks who feel their actions are improving the lives of people with disabilities. But, unfortunately, efforts to help do not automatically equal actual improvement of lives. What are the problems?

1. Helpers Have More Power than their Recipients
Those who help hold all the cards; that is, disability service professionals and not those in need of support, mange the funding, call the shots and make the rules.

2. Helping Programs Arise from Prevailing Disability Service Fashions
Various disability service models have come in vogue over the years, and what is popular often determines what form the help will take. Sometimes what is popular has been poorly researched, if studied at all, and not held to any level of accountability. For example, studies have produced no evidence that time spent in sheltered workshops helps the employability of people with disabilities. In fact, the opposite is true.

3. Helpers Can Succumb to a Rescue Mentality
Those who help, regardless of how well-intentioned their motives, can easily take on the role of savior and protector against all others. This dampens their ability to hear genuine criticism, insulates their approach, and at the same time, places the people being assisted as helpless without their rescuer. The rescuer will often have the individual being helped follow a path that leads to dependency rather that self-sufficiency.

In the end, benevolent ableism is often at the root of what is keeping those who mange models that segregate and isolate people with disabilities from changing what is obsolete. The rescue mentality, the resistance to innovation, and the self-serving “we know what’s best” is ultimately preventing people with disabilities from more individualized supports that could lead to more inclusive lives in our communities.

If the disability field is to support the quality of life for people, we must realize that the concept “quality of life” can be a very elusive and varied goal for each individual. We should all, including those of us who are advocates for change in the existing system, have an openness to hear views that challenge our thinking. After all, if we are to escape benevolent ableism, we could all use a little more humility in our efforts to help.

How often do we see it when we look back at our work year? Task forces created, planning groups assigned, attending meeting after meeting, writing goals and objectives, action plans, giving assignments, and then… and then… We look back, and then look around, and we notice that things are not really that different. It’s the Perpetual Planning Syndrome.

Planning, with all its complexities, still has one purpose. And that is to make the things we DO – the actions we take – for ourselves, our agencies, and others, more efficient, effective and meaningful. That’s because haphazard actions to try to change or create new services can lead to unintentional outcomes that can be wasteful or even harmful.

In fact, the greater the complexity of the action, and the more significant its impact, the more thoughtful planning is needed. For example, transforming an agency from a facility-based model to a customized community-based approach requires thought and sensitivity. You should have clear strategies for engaging stakeholders, stabilizing funding, building your service capacity, and downsizing your reliance on a facility. But should a clear plan take endless meetings and years to accomplish? Not at all.

You don’t need to define every aspect of every possible situation to evolve a service. And a main reason is that each step taken toward your goal will lead to new information. In addition, you will likely experience new and different circumstances than what you anticipated. The longer the timeline goes out, the less valid will be the strategies you are making plans for now.

To start, always have a clear idea of what your ideal end point will look like – this is important so that you just don’t keep chasing new ideas because it’s the latest hot idea. Know your vision then figure out what initial steps you need to take within the first 6 to 12 months that will get you committed to the real innovation and change that meets your mission. Once you accomplish these, review your end goal to be sure it looks the same, and then figure out where you need to go next, based on what you learned and where you are now. Get some advice from people outside your frame of reference, who can dispassionately tell you what is working and what isn’t.

By the same token, this is true on an individual level. For example, if career planning and the Discovery Process does not lead to a quality job for someone, then all the strategizing has been besides the point. Don’t confuse the goal for the tools you use to help get you there. Doing Discovery is not a goal. You are no closer to a job with a Career Plan, unless it is actually used to find a good job match.

The goal is a job, not a plan. Or, for an agency, the goal are people in good jobs and not workshops. Making a plan does not get you started; it’s only a preliminary road map. What gets you started are taking the actions you’ve thought about and then making successful outcomes. Time is important. Many people with disabilities have spent lifetimes without opportunities to experience life in the way most of us take for granted. Excessive planning wastes time, and lives are wasted while professionals meet.

Yes, a road map is useful to get you to where you want to go efficiently, but it’s taking the actual steps that count.