Thursday, June 20, 2019

Where There's a Will, There's a Way

      Too many of the 1 billion of people with disabilities are denied the choices non-disabled people have: how they spend their time, experience activities of personal hygiene; what they eat or wear; when they go to bed or have access health care; how they socialize with others, travel around, or get an education or job; and where they live. These discriminatory and invisibility perpetuating practices must stop. They are morally wrong and economically stupid. We all know that. Yet, around the globe, and in places in the U.S. all things are not as they should be. The challenge is what are we willing to do to bring about needed changes?

       Let's start with some questions.  1) What do we want to change? 2) What supports do we need to bring about this change? 3) What steps should we take to bring about the change? 4) How would we share the change?  

       It could be broken curb cut at the end of a sidewalk in a neighborhood, a lack of rides for social activities, no accessible bathrooms or menus at favorite restaurants, or no active recruitment of applicants with disabilities for entry level jobs by employers. If we were all in a room together I know we could generate a list of what is needed to pull any of these off. Of course, we also could easily generate a list of action steps. All we need is the will to gather in a room and get to work.

      The conclusion I have reached is that anything is doable and a good thing is everyone's responsibility, not someone else's. We just need to have the collective will to do it. Now, here's the clincher. If we do commit and do pull something off we need to share it. Why? Because if people see and hear about what we pulled off, they may be inclined to do the same thing or at least copy our strategies. And then, an effort to pull off one effort to begin an inclusive community becomes a TREND. Wow, how about that!

       Locally-driven efforts result in sustainable change and build confidence to tackle bigger and bigger challenges that can impact national policy.

       Thank you,
       Common Grounder

Monday, June 17, 2019

Self Determination, Choice, and Disability Rights

Before a person with a disability can secure a place at a decision-making table to bring about change -- access, availability, and rights -- they need to be self determined in their own lives. Even with that they need choices from which to pick and a team helping them secure those choices. The process of becoming self determined and making choices in one own life, prepares a person with a disability contribute to decision-making in large contexts.

At the Center on Disability Studies, College of Education, University of Hawaii at Manoa, my colleagues, Eric Folk, Bob Stodden, and Sean Nagamatsu, with funding from federal and state sources, are running three projects to help individuals with disabilities achieve success in postsecondary education. A key component of their work is to expose young people to the concept of self determination and apply its principles in their own lives. They define self determination as when an individual has the awareness, skills, and power to make the right decisions for themselves and their futures. They break down self determination into four things 1) knowing what you want, 2) regulating yourself to work for it, 3) believing and knowing you will succeed, and 4) finding partners and advocating for what you want.

Folk et al. train young people in how to be more self-aware; regulate their habits, actions, and thinking, that is be in control; introduce self-efficacy, that is aim high; practice self-advocacy; set goals ("a goal is a dream WITH A PLAN you will actually do"); engage in problem solving (identify a challenge, consider ways to address it, decide which way to address it, and then take action); be decision makers (identify options, consider each based on facts, and select the best option based on your goal, life vision, and situation).

Practicing these basic skills in one's own life prepares everyone to be meaningful contributors at decision making tables where access, availability, timing, supports, funding, staffing, and other key decisions are being made about community improvements in education, jobs, health care, housing, transportation, retail sectors, physical infrastructure, justice, elections, and use of leisure time.

Rights are words on paper. The UN disability rights treaty, the Convention on the Rights of Persons with Disabilities, gives us a vibrant blueprint of what should be. But, it falls to us to bring these words to life. So many people with disabilities, especially in developing countries, in rural areas, and from disadvantaged groups, lack the opportunity to become the decision maker in their own lives, much less help shape what their communities or nations offer to be in sync with the UN treaty. We must find the ways and means to reach these people. First, we need to listen. Second, we need to help them with THEIR preferences, priorities, or goals. Third, we need to offer a process for reaching THEIR goal(s), a process that is translated into a local frame of reference. For example, we cannot demonstrate how to plan if a person or group have never heard of or done planning. Fourth, we need to explore with these people how to capture and preserve the evolution of their efforts -- dairies, story telling, records, and reports -- written and audiovisual -- that become a natural, acceptable extension of in-country traditions.

If we do all this with respect and patience, the right kind of attitudes, behaviors, and policies will blossom; communities will be more inclusive; and individuals with disabilities will help stitch the social fabric of their neighborhoods, towns, regions, nations and our collective history.

Thank you,
Common Grounder

Sunday, June 16, 2019

Measuring the Status of Disability Rights

 There is modest support around the world for training individuals with disabilities, especially through disabled persons organizations (DPO‘s), to learn about and push for implementation of the UN  Convention on Persons with Disabilities.  Emphasis is given to sharing information, perhaps some role-playing exercises, but not much time or money is spent on tracking  immediate, intermediate, and long-term impact of training.  The answer is obvious. Impact evaluation is labor-intensive, time-consuming and expensive.  So when we ask for money for yet another disability rights study/initiative, funders ask where is your evidence-based information?  We may be able to provide numbers in some cases, but often all we have to make our case is case studies and anecdotes.  This needs to change. We all have to get serious about compelling evidence and develop practical ways for collecting it.

One option might be to adapt the SMART Goals approach and use it to collect information on the status of disability rights. The “S” stands for specific, the “M” for measurable, the “A” for achievable, the “R” for relevant, and the “T” for timing. This rubric is all over the web. It is explained, used, and promoted in educational contexts usually.

 In a disability rights context the “Specific” would be what do we want to measure; for example access, availability, inclusion, participation, independence, choice. Yet, we need to place these “ outcomes” in a situation — access to what, availability to what, inclusion in what, participation in what, independence connected to what, choice over what. “Measurable” to us would mean we could count something and compare it to a baseline or compare what we find across locations, populations, or environments. We could measure satisfaction, change in circumstances, degree of influence, or scope of change.

“Achievable” means first and foremost that we have a strategy(ies)  to implement a goal AND measuring something AND the resources to do it. This component of a SMART goal is so important because if we do these things right we have the justification for sustainability and the foundation for replication by others.

“Relevant” is the key link to rights. Is what we are expressing, measuring, and achieving valued by the individual with a disability, groups of such individuals, their families, and society in general? We need to do pre-assessments on what we think is important by getting input from these several constituencies.  This input will allow barriers and unexpected allies or partners to surface.

Of course, how much time we have to design, implement, and evaluate a SMART goal keeps us grounded and practical, and also makes us accountable. If we do what we said we  are going to do by the time we said we were going to do and have compelling results to show for it, guess what — we have credibility, an army of supporters, a guide for others, and evidenced-based reasons for systems change.

As you think through the application of the SMART goal paradigm in a disability rights context, remember the five components are integral to each other.  As you shape your approach to one component that may influence how you shape others.

We need to make measurement a central, integrated element of anything we do to advance disability  rights.  If we do, others, including governments, will take us more seriously, and accept or develop policies that make sense and are enforceable.

Thank you.

Common Grounder