This summer we celebrate the 26th anniversary of the passage of the Americans with Disabilities Act. This landmark legislation opened the doors of opportunity to millions of people who have since demonstrated that they are ready, willing and able to contribute in so many ways to enriching our society. We have all reaped the benefits of this legislation and discovered that our communities are stronger when everyone is given the chance to participate.
We won’t be truly honoring this anniversary, though, if we only look back at what has been accomplished without also taking into consideration what is yet to be overcome.
Unemployment and poverty rates are still unacceptably high for citizens with disabilities. And there continue to be disturbing incidents of discrimination against people with disabilities both in popular culture and in daily life.
I had a conversation once with a father of a daughter in her early 20s who recently acquired an apartment in the downtown area of a major city. He told me that when word got out that it might be a location where other people with disabilities might choose to live, neighbors reacted and organized, declaring that they “didn’t want psychotic people walking around the neighborhood.”
This was said without any knowledge of who these prospective neighbors might be as individuals, only who they were as a category – the category of “disabled.” Numerous parents whose children have disabilities have told me of similar experiences. They have come to learn that their son or daughter is susceptible to being “profiled” in this way.
This is called “ableism,” and it is not tolerable.
It means that simply by being born into this category that we call “disabled,” even total strangers feel that they have permission to make declarations about where you might live. Laura Marshak, Claire Dandeneau, Fran Prezant and Nadene L’Amoreaux wrote in a publication called “The School Counselor’s Guide to Helping Students with Disabilities” that “(s)imilar to many of the assumptions underlying the medical model of disability amongst many clinicians, the “ableist” societal world-view is that the able-bodied are the norm in society, and that people who have disabilities must either strive to become that norm or should keep their distance from able-bodied people. A disability is thus, inherently, a “bad” thing that must be overcome. The ableist worldview holds that disability is an error, a mistake, or a failing, rather than a simple consequence of human diversity, akin to race, ethnicity, sexual orientation or gender”.
This phenomenon of one group of people feeling empowered to determine the fate of another group of people is precisely what the framers of the ADA were cognizant of when they stated that “disability is a natural part of the human experience and in no way diminishes the right of individuals to live independently, enjoy self-determination, make choices, contribute to society, pursue meaningful careers, and enjoy full inclusion and integration in the economic, political, social, cultural, and educational mainstream of American society.”
The good news is that there are actions we can take to mitigate these dangerous attitudes. We can create positive change and eliminate stereotypes by phasing out segregated classrooms and sheltered work and congregate activities that reinforce popular stereotypes. Professionals encourage and support people with disabilities to exercise their own voice and declare their constitutional rights to life liberty and the pursuit of happiness.
People with disabilities and their families can make the decision to choose inclusion – every person is born included – and take their rightful places as participating, contributing members of their communities. Retreating into so-called “intentional communities” cannot be the answer. While they are often designed with a view to safety they actually reinforce concepts of “the other” that are the foundation of ableism and thus magnify the dangers to us all. And the evidence of that danger surrounds us. We live in a time when a major party candidate can mimic a reporter with disabilities and receive roaring approval from a stadium crowd; a time when, in this ADA anniversary month a Vermont man is given a 3-month prison sentence for poisoning a child with disabilities by pouring vodka into his feeding tube; when a man goes on a rampage in Tokyo, Japan stabbing 19 people to death saying later “It’s better that the disabled disappear”.
Wolf Wolfensberger saw these phenomena as interconnected and gave it the name “deathmaking”.
Stigma and stereotypes run deep. It is not tolerable to continue to discriminate and marginalize whole groups of people. We all suffer the consequences. Let’s speak bravely and truthfully about this aspect of our society. Acknowledging the existence of ableism in all of its ugly incarnations is the beginning of the change that is needed. Let’s honor the work of those who created the ADA by working to realize their vision of a whole society.
It is in the very nature of being human that we each have gifts to share that can enrich the lives of others. And whether you are a parent, direct support professional, brother, sister or simply a good friend of someone who experiences a disability you know that this truth holds for everyone without being limited by any socially constructed definition or boundary that has been set up to label or divide humanity. In fact, it is in the very characteristic of the diversity of the human experience well outside of the limits represented by those who are neuro-typical or average that one can truly appreciate the depth, range and beauty of the human condition.
If we know this truth – that everyone has gifts to share – then it is both a moral responsibility and professional duty to help those that we support in discovering their gifts. This is so compelling that one would think that we would have figured this out as a prime directive by now. However, this responsibility has some barriers that are built in to our biases both culturally and systemically.
We Are Shy And Humble
It’s hard for us to acknowledge what it is in our own presentation to the world that is a gift to others. Particularly when we are having “bad days” our thoughts are consumed with responsibilities and tasks that need to get done. We’re distracted from a sense of kindness and gentleness to ourselves that really is warranted. Here’s one suggestion on how to correct this. Divide a piece of paper down the middle. At the top of each side write “good day” on one and “bad day” on the other. Now begin to write down a simple list of all of the elements that contribute to you having a good day. Start with at the very beginning. Are there certain things that set you off on the wrong track from the very start? Are there routines or rituals that help you feel centered? What are the things that you do to calm or comfort yourself? Now move to the other side of the page. What are the things that really rub you the wrong way? Start at the beginning again. What doesn’t work for you in the morning? What upsets your concentration or appreciation of the things that you love? Now that you’ve completed your two lists, go through the items and see how many you can increase the chances of (good day) and how many you can avoid or prevent the likelihood of (bad day). Then make a “to do” list to make those changes. Some you may be able to do on your own. Others may require taking the initiative to ask something from someone else. Ask yourself “How can others support me in my work in this way?”. Then share it. By the way, this same process should be used with everyone that you are assigned to support in your work. It’s an important part of creating One-Page Profiles ( http://www.helensandersonassociates.co.uk/person-centred-practice/one-page-profiles/ ). See if you can make tomorrow different. And remember, if you are a direct support professional, every day you are making the world a better place!
If we don’t take the time or give ourselves the permission to appreciate our own gifts then its next to impossible to go beyond ourselves and find the gifts in others. Take care of yourself first. Then, and not before then, you’ll be ready to take care of others.
Our Concept Of What Is A Gift Is Too Narrow
I have a co-worker who experiences cerebral palsy. He’s an official in the Vocational Rehabilitation agency. He uses a motorized wheelchair to get around and sometimes has an assistant ready to interpret for others what he is saying because he forms his words differently and people who are unfamiliar often don’t understand him right away. I recall a morning meeting once where he and I were present along with about four other people. Everyone had their large coffees and were pretty cranked up on the subject at hand. It was rapid fire and I remember having the distinct sense that the discussion was beginning to get circular. Then this co-worker gestured in a way that we recognized that he was about to speak. And he spoke. By necessity he has a certain economy in speaking because there is some effort in getting the words out. So he spoke…very…slowly…and deliberately. It allowed the rest of us to pause and…listen. He offered some good thoughts. But, more importantly, he offered us a gift. The gift of slowness. We re-assessed where our decision-making was leading us. We got back on track. Our meeting was better. Have you ever gotten behind someone in the supermarket line that was taking a long time and you couldn’t switch lines? Have you ever resolved to just take a breath, accept the situation and perhaps pay attention to something that’s beautiful around you now that you have the time; a baby’s smiling face, the funny conversation next to you, an interesting article on the magazine rack? You’ve just been served the gift of slowness.
I know someone who doesn’t use words to communicate, relies on a wheelchair, and has the assistance of a direct support staff person for regular care throughout the day. She’s has a quiet nature, loves kids, and enjoys time in the library. She’s also fortunate to have someone in a DSP who takes the discovery of gifts very seriously. She made plans with this person to play a role in story time at the library. While this person calmly holds the book open (she can do this with a very steady hand and for quite some time) the DSP reads to the kids and they turn the pages together. Together they are volunteering at the library to enrich the education of children. The kids are recipients of the gift of knowing that everyone can contribute and that “differentness” is actually OK and eventually isn’t so different.
The Stereotype Of Disability As Being “In Need”
Because of history and bias, people with disabilities are too often viewed as always being in need: of public dollars, of assistance, of care, of being “fixed”. This can only change if history changes and the role of offering to others, of being involved in reciprocal relationships where “I benefit from knowing you; you benefit from knowing me” is established and allowed to flourish. The good news is that once established and with regular, discreet encouragement and support, reciprocal relationships have the tendency to grow exponentially.
This is where the moral responsibility and professional duty comes into play. The prime directive becomes this: Our responsibility to those that we support is to help them discover their gifts and to find places where those gifts are appreciated!“ This means that we shatter the program-centric schedules of activities and adopt person-centered thinking approaches to be with people in those activities that shine a light on their gifts. That’s impossible to do if the gift that someone has is the effervescent, energetic personality where they want to smile and great as many people as possible in a given period of time and the schedule says that it’s group time at the library. It’s not possible if one’s gift is the joy of talking one-on-one about the troubles of the day and it’s group Bingo time. It’s not possible, so it has to stop.
If you have thoughts and ideas about this prime directive and you are on a journey to make it happen, what has it been like for you? You’re on a new path. It’s exciting. It’s challenging. Share your stories with others in the comment section below so that we can all learn and help to transform the lives of others.
Organizations that provide support to people who experience disability need to invest in a well trained workforce. Direct Support Professionals, armed with the insights and values that are at the heart of the mission of community based services are the key to meeting that mission. Without it a provider agency can remain stuck in a cycle of just getting by; meeting just the minimum standards of care, health and safety and may even err in sustaining diminished lives for the people who are supposed to benefit, resulting in more harm than good. In New Hampshire, Direct Support Professionals are offered a solid base of exposure to values-base approaches through the on-line Relias training sessions. However, this training is only the beginning. Face-to-face instruction with opportunities for dialogue, peer support and dynamic activities that challenge the assumptions that arise from culture is an essential second step. One such program that has proven results is the DSP Certificate program offered on our community college campuses. In central NH the New Hampshire Technical Institute has sponsored this program and it has been piloted at Antioch College and in the Portsmouth region.
ADDING VALUE TO YOUR INVESTMENT IN DIRECT SUPPORT PROFESSIONAL TRAINING
“Just as ripples spread out when a single pebble is dropped into water, the actions of individuals can have far-reaching effects.” – H.H. the 14ths Dailai Lama
A DSP with a strong set of skills and insights into the values of a person-centered approach can be a powerful force for change. They’re prepared to pay attention to aspects of their work and the people they serve in such a manner that the world initially seems new. They are prepared to be effective learners and allow the people they serve and those who know them best to be their teachers. They learn how to explore what is “important to” the person and think about bringing that into balance with the previously dominant focus on only what is determined to be “important for” them. However, the laws of thermodynamics in the physical world also have parallels in the social dynamics of an organization. Entropy describes the process of degradation, running down and the trend to disorder in our universe. Using the analogy of the pebble in the pond; the pond eventually goes still. This happens only if the leadership fails to continue to add energy to the essential task of intentionally designing processes that allow for the competencies to grow, become complex and eventually enter into the realm of habit. Without such determined leadership, DSPs that completed values training return to their work settings facing the same challenges and pressures that they left. Even if their previous coping and problem-solving approaches lead to the same results, an unchanged culture reinforces them and without structured opportunities that increase their influence to question and challenge what they experience they will turn to a path of least resistance. There are ways to make this not happen.
THE THIRD STEP – CHANGE MANAGEMENT
The concept of using culture shifts, new processes and promoting new skill acquisition to accomplish a strategic shift in an organization is not new to those in leadership positions. If you have committed the critical resources of time and money to training staff in person-centered skills it must have been in service to a higher level goal. In other words, if a renewed focus on placing the person at the center of how the organization functions is not accomplished some important opportunity to function effectively in the future will be lost. The leader, then, must be in it for the long haul and that means a full commitment to seeing the organization through the stages of “exposure”, “competency” and finally to “habit”. It also means that there needs to be an honest discovery process to determine where the organization’s system is falling short and needs to change at all levels. Your DSP staff will leave the certificate program with new insights and the basic set of skills of values-based thinking to try them out in their daily work and to teach co-workers what the deployment of those skills entail. They can change their own behaviors in many ways that don’t require permission from their immediate supervisors. This is what is referred to as “Level I” change. The word must go out to supervisors that this type of exploration is permitted and encouraged. The word also must go out that the organization is committed to identifying any practices that could become more person-centered but for certain agency policies or procedures that prevent or complicate them. Best practices for high functioning organizations always imbed this goal into structured continuous quality improvement systems. One approach is to recognize the DSP who has completed the more extensive face-to-face program of training as “coaches” to others in their work settings. Recognize them as an important investment in the broader agency goals and mission. Consider implementing structured monthly or bi-monthly meetings where these coaches meet with members of the leadership team and are facilitated to identify specific recommendations for changes in policies and procedures to promote better practices. This continuous quality improvement strategy must be more than just a matter of mechanics. It must reflect the core principles of person-centered thinking itself. Smull, Bourne & Sanderson, in the 2009 publication on “Becoming a Person Centered System” wrote that “(t)he message that ‘we all need to change’ rather than ‘you need to change’ is a powerful one. We must all see ourselves as change targets before we can become change agents. The representatives from all system partners need to be the same people across time, they must attend consistently. They must be actively engaged in listening, in discovering, in sharing and in problem solving.”
Tuition for the DSP Certificate course can be funded through a combination of employer dollars, matching grants and the personal funds of the DSP themselves. Having ownership in their own professional development is not foreign to a Direct Support Professional. Everyone that we have sent through this valuable course have expressed their willingness to do so. There is a will but there must also be a way that the cost is proportionate to their salary. Agency investment is also not foreign to how any organization handles their human resources programs. Make that investment count. Create a welcoming environment that recognizes their ability to make new contributions. Your agency will be better for it.