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.
We can learn a lot from the practice known as Appreciative Inquiry. One of the core principles of that practice is this: we live into the questions that we ask. And this aligns really nicely with what we do in our field with positive futures planning. We live into the questions that we ask. Here’s how this applies this works for us beyond the planning that we do in organizaing supports for people with disabities and how you can apply it to you day-do-day work. So, let’s say that your helping a young woman named Karne who lives in he wonderful town of Canterury New Hampshire and she shares her hopes and dreams with us. One of them is that she will learn how to ride horses. In helping her you have to answer some questions. One could be; “where do people with down syndrome learn to ride horses?”. Another could be; “where do people who live in Canterbury who love horses, learn to ride and enjoy this common love?” Which question you ask will result in very different outcomes. The first could result in a fun activity that Karen looks forward to and enjoys the company. People might say; do you know that great kid in special program that they run in Canterbury? However, the other could result in meeting others who are really great at horseback riding who she could watch and learn from. She’d be known as a member of a fairly exclusive group. She would meet people who might share other interests that she has in common but haven’t been sparked yet; and perhaps imagine hopes and dreams that have never occured to her before. She’d be exposed to others with a ready made network of relationships and maybe get entangled in the web of caring and love. People might say; do you know Karen, that kid with a great sense of humor? When you work each day supporting someone who experiences disabilities, which type of questions are you going to ask? We live into the questions we ask. And your choices can change peoples lives forever.
When you meet kids who make up the next generation of those who we now refer to as “disabled” you have to wonder what they will think of the how well we have done in setting the stage for their success. In many parts of the country we’re living through a post-segregationist era. Torn loose from the bricks-and-mortar facilities and armed with the new technologies that allow all of us to perform beyond our expectations; will they view us as good stewards of a time of opportunity or as a generation that pulled back and retreated from the future or unknown challenges and dangers? When I have met these kids they surprise me with their boldness in “claiming” their disability. They study their diagnosis and, by owning the language, own their future. I know of kids who wear arm bands that playfully declare “attention deficit”; even tattoos! Toddlers wear tee shirts that claim “I have an extra chromosome and I know how to use it!” And yet, there are other parents who have decided that the world is a threatening place. They’ve experienced the pain of watching their kid’s social circles diminish after High School and commit their hared earned resources to creating protective housing; what many of us have worked decades to dissolve and liberate.
I didn’t choose the title of this article lightly. I come from the 60’s generation…OK, the 70’s. But I have to say that I judged my parent’s generation harshly. Why were they trying to hold us back, insisting upon old rules and conforming to standards of bygone times? I must also say that, while I rejected this conformity for much of my early years, a seminal moment came when I watched the film “Saving Private Ryan”. I cried at the end of that movie. And I thought, my god, no wonder my parents thought that we were squandering everything that they sacrificed. A whole generation dedicated to making the world safe, And all we had to say was, fuck off!
So, today I meet parents who have raised their kids with disabilities well. They’ve read every book and signed up for every lecture. They’ve attended the IOD Leadership Series and met the leaders in the field espousing progressive views on a vision of a new world for their kids. And yet…they alone face the question; what will be there when I die? You may be reading and thinking, “I deal with this for all of my kids”. But there’s a difference; at least I think that I understand that there’s a difference. The parents that are most challenged by this question are simultaneously confronted with the experience of seeing the social circle that they have worked so hard to create around their child throughout school completely disintegrate upon graduation. Ashes to ashes. Watch that happen to your child and stand back; mama bear and papa bear are ready to roll.
So, is the answer segregation and protection? Bricks and mortar? Or is the answer, going another round with building an adult version of circles of support? Maybe there is a middle ground. However, what cannot be denied is the cautionary tale of the horrible consequences on a societal level of segregation. When I watched “Saving Private Ryan” I remembered what the greatest generation saved us from. The world was at risk of domination by a totalitarian ideology that was based on a theory of a master race, and pursued a course of extinguishing all people who diverged from that concept of purity. In the liberation of the concentration camps, members of my parents generation witnessed first hand the consequences of this theory. Today we have films of the soldiers, weeping and staggering through the process of liberation of the concentration camps. But they were too late to liberate the people with disabilities who were the first to experience the horror of this regime. The irony has been lost in most of the depictions of this horrible time in our world history. Not only were people with disabilities the first victims, but their horrible destiny was a direct consequence of the Nazi party’s appreciation of the best research and studies of those circles of academia in the Unites States that championed success, dominance and beauty. No less than the great justice Oliver Wendell Homes stated: “It is better for all the world, if instead of waiting to execute degenerate offspring for crime or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind…Three generations of imbeciles are enough.”
And so, back to the question; what will the next generation think?”. They will thank our grandparents for making schools accessible. They will thank Steve Jobs for creating a device that supports cool apps that provide better communication and methods social engagement. They’ll thank the Kennedy’s for their multi-generational commitment to people with disabilities – some helpful, some not – all grounded in the family guilt regarding the lobotimization of Rosemary (there, I said it). But here is the real answer to the question; will the next generation of kids say that we placed the issue of disability rights squarely on the mantle of civil rights? Did we promise fidelity to the Constitution? Did we act as Martin Luther King did in rejecting small compromises and declare the right to ultimate equality and justice. Did we join in the broader movement of the dispossessed and marginalized and enroll our families in the cause that sets our eyes on the arc of history? I think that our kids are smart. I think that they see the arc. I think that they believe that it bends towards justice.
Don’t Hold Me Back