Sunday, September 8, 2019

Marca Bristo

I have known Marca Bristo for a long time, perhaps since 1981. She’s the kind of person you feel like you have known forever. We were professional colleagues invested in inclusive communities, promoters of disability rights. She died this morning. Her passing is a substantial loss for many people in many places who she has touched with her wisdom, kindness and powerful sense of what is right.

Marca was a study in contrasts. She was compassionate and tough, a visionary yet practical, open yet demanding, a consensus builder but a fierce opponent. She knew how to organize. She knew a good message when she saw it. She knew how to call a bluff and she knew how to regroup after a setback. She built things. She took risks. She inspired others.

This year she bought a group of us together to write a proposal to the MacArthur Foundation through its 100 and change initiative. The winner of this competition will receive $100 million to implement its big idea. She did this while dealing with a diagnosis of cancer.

She was the long time president of the U.S. International Council on Disabilities. She was the founder and until last month the CEO of Access Living in Chicago, a highly successful independent living center. She influenced and helped draft the Americans with Disabilities Act. She bought accessible transportation to Chicago. She advised others around the world on disability rights and how to create centers for independent living.

If I were to guess what Marca would say to us now from her accessible perch in heaven, it would be this.

It’s OK to make small steps in the right direction as long as you keep your eye on the prize.

Building coalitions and creating powerful voices are necessary steps if we want sustainable change in the area of disability rights.

We have an obligation to learn from and share with others, what works, if we are serious about building inclusive communities.

Look for connections between things and treasure relationships you build, they will help you get to where you want to go more quickly.

Most of my communications with Marca over the last year have been by email. I wish I had talked to her more about her family, being a grandmother, and how she was feeling. However, we recognized her time was short, so we both focused on what needed to be done. I want a “do over” so much!

I’ll miss you, Marca.

Thank you,

Common Grounder

Thursday, July 4, 2019

Independence Day, Not for Everyone!

Families are not perfect. Dynamics in families can be complicated. Within families particular situations and personalities may make things difficult. But, basically speaking, in most there are the elements of support, nurturing, protection, and predictability. For people being detained on the border these elements are missing -- no family, no support, no protection, and no predictability, as well as, minimal access or no access to hygiene, weird food, and no space. It's horrible and I know what I'm talking about.

When I was 13 my mother and father took me to a hospital where I had orthopedic surgery over a six-month period. I was not allowed to see my parents during that time. The only person that I saw, who I knew when I entered, was my priest, once. My mail was subjected to some kind of sanitation process. So writing in letters with ink was blurred and often unreadable; cards, books and gifts were crinkled and mildewed; I had nothing of my own, just hospital clothes. Underwear was at a premium. There
were a lot of cloth diapers, however. The nursing staff was modest. So when you were bedridden with plaster casts following surgery, you were often dependent on other children who could walk and use their hands to get you a bedpan. The older girls in the all-girl ward, who could walk and use their hands were in power. If they liked you, you got a bedpan. If they didn't like you, you didn't. When you washed up and how you washed up was dependent on somebody else. That schedule was controlled by others. Meals were delivered on a rigid schedule. If there were great desserts the older girls, who could walk and use their hands, would take them from your tray and eat them. We had school. We were taken outside in good weather once a week in June and July. The only physical activity was that related to daily physical therapy, once a day for 15 minutes in front of everyone. My space was a bed. The next bed was two feet away. There were 30 beds in the ward where I was housed. I felt like I was in prison. I couldn't understand why my parents put me in such a situation. I knew only that it had to end at some point and that I must be strong. After that six months experience, I was a different person. I was more self-reliant. I picked my friends carefully. I knew that life was not going to be a walk in the park and I had to prepare for it.

Pediatricians and Congress members have been talking this week about the women and particularly the children being held at the border -- about their blank stares, about children helping children; about the absence of nurturing caring adults especially family members, clean clothes, decent food, a bed; drawings, tears, and messages asking for help written on hands; and the inability to wash up  and brush teeth. This is so wrong and so damaging. It must stop.

I know that Congress has passed a bill to spend more money to fix the situation on the border. I don't think the Border Protection Service is equipped psychologically or logistically to do the right things tomorrow. I think the money that Congress appropriated should be given to the American Red Cross and other similar groups immediately. They can reunite parents and children. They can find acceptable living spaces for people. They can track where people are. They can save us all from what I experienced as a child and what so many children are experiencing now. Not one more day should pass without help for the poor people on the border. They risk their lives for freedom and a better life and they are experiencing hell. We must make the federal government act quickly to restore these people in the proper manner and live up to the principles in our Declaration of Independence.

Thank you.
Common Grounder

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

Friday, June 7, 2019

IT'S TIME FOR INCLUSIVE INFORMED DECISION-MAKING



 Individual Level. 

The perspectives of an individual with disability, delivered by that person at the right time, means that decision-making that affects that individual, will be well-informed and result in positive outcomes, especially related to quality of life.

There may be situations in which an individual cannot fully represent the individual’s perspective at a decision-making event that will affect the individual, because of age, communication facilitation, distance, lack of accessible transportation, appropriate supports, risks, and other factors. In these situations, policies are needed that outline what proxies, services, and supports, including technology, will be provided so that the individual’s perspective carries central weight in arriving at decisions that will affect the individual.

Community Level.

Community decisions affect the nature of what community members can expect and receive. People with disabilities need to be present when these community decisions are being made. Community decisions are related to a diverse variety of contexts – availability of housing, food and water, education, health care, jobs, transportation, justice, voting, leisure activities, and other elements of community living. Often community decision-making events address if something is going to be promoted, increased, improved, expanded or terminated, as well as the cost or savings involved.

The “how to” part of a decision to be made can benefit from the perspectives of individuals with disabilities; such as – where something is to be placed, physical access to it, and ability to use it/participate in its use with others; and when something happens, how frequently it happens, and for how long it happens. Decisions like these require policies, so that community expectations and what happens align. If individuals with disabilities play a role in making these decisions and shaping policies related to them, the outcomes for the entire community are enhanced.

Regional Level.

Because of geography, race, language, religion, culture or other factors, people may come together to live and/or make decisions that affect large numbers of people beyond a particular community. Some decisions are value-driven – who should be included vs. excluded, who should “represent” a particular group, what are the assumptions underlying a particular value, and who or what has the power to change things? At this level, if and how individuals with disabilities are perceived – as an equal partner or something less – will influence whether their perspectives are part of the process of reaching decisions. If they are viewed as equal partners then decisions and their outcomes are likely to benefit great numbers of people.

National Level

At the national level participation at decision-making tables is pivotal. These decisions drive new policies and affect established ones. These decisions are shaped by what bubbles up and trigger what trickles down. Perspectives of individuals with disabilities, especially those coming from their problem-solving experiences, help to build policies that can be easily interpreted and practically implemented. Including these perspectives may mean that what is decided will pay off in intended and unanticipated ways – have positive economic implications, create new partnerships, and having a positive view of the future.

International Level

When the perspectives of individuals with disabilities are included and valued at decision-making tables then more meaningful discussions about what works, the importance of context, and judging of credibility within the process of decision-making surface. Resulting decisions are more grounded and people have more confidence in their feasibility and likely impact.

Intersectionality of Levels of Participation by Individuals with Disabilities in Decision-making

The inclusion of people with disabilities in decision-making is not a “snap-your-fingers” kind of thing. It takes thoughtful conversations, training, trial and error, and a full commitment to bringing it about. If an individual can leave home and travel to a meeting in the community, many things must be in place and work the right way first – personal care, transportation, and appropriate supports. When this person is seen and heard in a community decision-making meeting, things change. Others want to know how it happened. Others hope and take actions so they can do the same thing. As more and more people with disabilities are seen and heard at diverse decision-making tables in the community, this fact and their participation at regional decision-making tables becomes acceptable and natural. Behind them is what has been positively impacted at the community level. They arrive at regional decision-making tables with evidenced-based information. At the national level they have the same opportunity – to drive policies that are evidenced-based. For example, this is what we need in place to ensure educational opportunities, foster jobs, access to voting, or appropriate treatment by the judicial system. The collective experience of individuals with disabilities from across the globe brought about the U.N. Convention on the Rights of Persons with Disabilities and the inclusion of disability perspectives in the U.N.’s Sustainable Economic Development Goals.

Questions Related to Informed Inclusive Decision-Making

In order to bring about Inclusive, Informed Decision-Making at all levels we must ask ourselves six basic questions –

1.     What types of services, supports, and accommodations must be available to an individual in order to leave home?
2.     How do we bring about these services, supports, and accommodations?
3.     How do we measure the impact of making these services, supports, and accommodations available?
4.     How to we prepare and equip individuals with disabilities to become contributors in decision-making settings?
5.     What do we need to know to bring this participation to new situations or the next level?
6.     How do we measure the degree of participation in decision-making by individuals with disabilities and measure its impact in varied contexts?

As we answer these questions we will be able to judge whether participation of individuals with disabilities in decision-making is systemic, appropriately integrated into all components of decision-making processes, and can be sustained.


Thank you.
Common Grounder







Saturday, May 25, 2019

Sustainability of a Good Idea and Community Action Plans

In the social sciences a lot of terms are floating out there — person-centered planning, life cycle planning,  self-determination, and many more. A common component of these terms, when it comes to a person with a disability, is the person’s direct involvement in decision making that affects him or her. This is driven by federal laws, regulations, and funding. Underlying this trend and federal push is years of experience and research that contrast what occurs when individuals with disabilities are and are not at the table when decisions are being made about them. Good things happen when they are involved and not so good things happen when they are not. The positive effect of their participation, their perspective and that of their advocates needs to be extended to tables where larger community decisions are being made.

There is a lot going on in education these days. Central to these activities is the role of the school in the community. Two initiatives involve federal funding for Statewide Family Engagement Centers  (SFEC) and Full Service Community Schools (FSCS). The Office for Innovation and Improvement in the U.S. Department of Education, where these grant programs were housed, recently has been merged with the Office of Elementary and Secondary Education, so old links don't work. However, if you Google the grant names, you will be taken to the webpages for these two grant programs. We here in Hawaii have a Hawai‘i Family Engagement Center and have put in a proposal for a Full Service Community Schools grant. Underlying these two federal initiatives are requirements for collaboration from parents, employers, and community organizations. Included among the intended beneficiaries are children with disabilities. It is clear that these two initiatives are after structural change that will be sustainable. The question is how do we get there?

It is clear that when you bring a diverse group together that can agree on a common goal, as demonstrated through “communities of practice”, amazing things can happen. Individuals are energize, empowered, and committed to achieving a consensus-driven outcome. But, what is also needed is a plan, strategies, resources, a way to judge progress, regroup, and share. Perhaps it’s time we coin one more phrase — a Community Action Plan — a CAP could be for an individual, a school, a neighborhood, a town, a region, or a state. It could focus on one thing like a transition plan for when a student leaves high school; a big thing like finding entry level jobs and promoting them or expanding early learning for three-and four-year olds; or a complicated thing like increasing the capacity of health care professionals to interact with and serve people with disabilities effectively, expanding supported living housing options for people with intellectual and developmental disabilities, or expanding accessible public transportation.

Doing any of this will not be easy. Any group will need to have at the table — people who can help articulate the goal; people who know what strategies are likely to work or who can bring an expert in to advise the group; people who have or can find funding and develop a budget;  people who can shape and carry out progress evaluation;  and people who can craft messages and inspire partnership among implementers.

If every community of practice or group recognizes that it not only must agree on a common goal, but develop a CAP for it, then it is more likely it will achieve its goal and sustain the goal’s longevity and provide a replication guide for those with similar interests.

Thank you.

Common Grounder