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Spring 2009 Table of Contents
Versión Español de este artículo (Spanish Version)

By David Wiley, Texas Deablind Project, TSBVI Outreach

Abstract: The author discusses services for individuals with deafblindness and talks about the importance of joy, satisfaction and purpose in education as well as life.

Keywords: deafblind, deafblind education, quality of life, fun for individuals with deafblindness

Editor's note: In Austin on February 12-14, the Texas Deafblind Project sponsored the 2009 Texas Symposium on Deafblindness. This event included 31 presentations on a variety of issues related to deafblindness, and was attended by over 300 participants, including family members and professional from across Texas and around the nation. The theme of the 2009 symposium was Purpose, Satisfaction, and Joy in the Lives of Students with Deafblindness and the People who Care. I made these remarks to introduce the theme before the opening session.

The theme for our conference this year is Purpose, Satisfaction, and Joy in the Lives of Students with Deafblindness and the People who Care. That is a rather long sentence, and in the center of it we find the phrase, joy in the lives of students with deafblindness. How often do you come to a conference about education, and find that the theme is joy? What were we thinking?

In August of 2003 I had the opportunity to attend the Deafblind International Conference in Toronto, Ontario. Deafblind International, or DbI, as the name suggests, is a worldwide association promoting services and support for people with deafblindness. The organization sponsors a conference every four years in a location somewhere around the globe. This past one, in 2007, was in Perth, Western Australia. The next one is scheduled for 2011 in Dehli, India. So the locations are typically too far for me to travel. But five years ago the conference came to North America, Toronto, so it was more accessible. I went and had the experience of a lifetime, learning about deafblind services from people who live all around the world-different cultures with different perspectives. Linda Mamer, tomorrow's keynote speaker, as chairperson of the DBI Scientific Committee that year, was responsible for the program of speakers I got to hear at that event.

What stuck me on the very first day, at the opening plenary session, was how people from other cultures, with different perspectives, spoke in different terms than I was used to in the conferences I have attended here in the USA. The theme for the opening panel was Celebrating Communication Around the World and one of the speakers was Sheela Sinha, from the Helen Keller Institute for Deaf and Deafblind in Mumbai, India.

She started by saying, and I took these quotes from the conference proceedings:

As we all know, we are here today to rejoice in our common will to give each child 'the right to communicate to his fellow beings' and to celebrate what we have achieved in this direction till now.

Rejoice? I knew immediately that this was striking a different tone than most conference presentations I had been to or scientific papers I had read. Rejoice!

As she started describing communication strategies used at her school, she said:

Using 'Total Communication Approach' where one uses all possible modes of communication, varying from basic movements, cues and gestures to pictures, objects, signs, intonation pattern and even speech to some extent, we try to help each child maximize his/her ability to communicate in a manner which is not only effective but enjoyable too.

Rejoice. Enjoyable. She was using terms related to joy. Then we watched some video of her students, which she described in this way:

Communication is also 'having fun together'-fun which we can have only if we leave behind our 'adult wisdom' and enter the child's world as a comrade to discover what he enjoys and to be a part of that joyful experience& Communication is 'the joy of sharing too-sharing little pleasures of childhood, sharing the dreams and thoughts of youth'.

And she concluded her remarks by saying:

Lastly I would like to mention that whether the topic of conversation in these clippings was as simple as sharing a few candies, or a more complicated issue like marriage and friendship, it evoked joy in both the partners. And that according to me is the essence of communication. So let us all strive together to spread the message of 'joy in communication' around the world, as joyful communication is the very life-blood of all human interaction.

This was like nothing I had heard at a conference before, and it has stayed with me to this day-this emphasis on joy. I was used to the good old American emphasis on competence, independence, skill acquisition: the student will respond accurately 80% of the time with minimal prompts. Shouldn't we also be thinking about joy?

I contrast the views on joy in that presentation with those expressed to me by a teacher on a phone call I had received a couple of years earlier. She called me asking for advice on a student who was exhibiting some challenging behaviors. She described the problem like this. The behavior most often occurs when the bus arrives in the morning to bring the student to school. The student usually refuses to get on the bus, and the behavior escalates as the bus driver and her parents try to make her get onboard. Many days she doesn't make it to school, and if she gets on the bus, the behavior continues until she gets to school, and often on into the day. I asked if it happened every day, and the teacher's response was, and I'm paraphrasing here to the best of my memory, No. She is well aware of her schedule, and on days when there is something fun planned-a party, pep rally, or something like that-she gets on the bus without a problem. On those days we don't have any problems at all. It only happens on days when there aren't any plans to do something she thinks is fun.

I explained that these situations are complicated, and over the phone it is hard to get all the information. So typically I don't give advice until I've had the chance to visit, observe, and learn more about it; however, one thing kind of jumps out at me. What would happen if she has something fun to look forward to every day?

There was a long pause, after which the teacher replied, We can't do something fun every day. This is school! She pretty quickly ended the conversation, and I suggested she get back in touch and request a visit if the team wanted to follow up, but I never heard back from her. She was no doubt convinced that someone with such a dumb idea had nothing to offer in improving the situation. So I never knew how this turned out, but still I wonder why it is unreasonable to suggest that we can find a way for a student to experience joy every day. We should be thinking about joy.

In planning this symposium, we looked at the proceedings from the 2007 DbI Conference in Perth. There was a keynote presentation called Happiness as the Key to Success& by Paul Hart from an organization called Sense-Scotland. We tried to get Paul to come and talk to you on this topic today, but the schedule didn't work out. Among the things that stood out to me from the transcript of that presentation was a reference to a list of 12 steps to help your mental wellbeing, put out by the Mental Heath Foundation there in the UK. Well, I googled this list, and found it in many places on the Internet, encouraging the people of Britain to have an outlook that fosters good mental health. So I copied the list, and I'm borrowing Paul's idea to use it when discussing students with deafblindness. Keep in mind, this is not a list for people with deafblindness, or disabilities, or mental illness, or any other specific situation. It is a list for everyone of things to improve one's outlook and well-being, avoid depression, and I suppose find happiness and joy.

This is the list. Doctors recommend 12 steps that can help protect your mental well-being:

  1. Keep physically active
  2. Eat well
  3. Drink in moderation
  4. Value yourself and others
  5. Talk about your feelings
  6. Keep in touch with friends and loved ones
  7. Care for others
  8. Get involved and make a contribution
  9. Learn new skills
  10. Do something creative
  11. Take a break
  12. Ask for help

Consider which items on this list may present barriers for students and adults who are deafblind. Which ones might people who are deafblind find few or no opportunities to accomplish? Something like keeping physically active, which can be so simple as typical children run and play, often requires planning and support throughout the life of a person who is deafblind. Communication issues may form barriers to sharing feelings and keeping in touch. Individuals with deafblindness may not have as many opportunities to make a contribution as people typically do. Even something as ordinary as taking a break becomes complicated when a person must continuously be working hard to gather basic information from the environment, and processing the implications of the fragmented information that does come through.

It also stands out that this list of things leading toward happiness or joy doesn't really include playing or partying. Valuing yourself and others. Caring for others. Making a contribution. Learning new skills. Doing something creative. These things that lead us toward happiness involve gaining satisfaction from having a purpose you value. Purpose, satisfaction, and joy, the elements of our theme, go hand-in-hand. They involve motivation-tapping into personally rewarding things our students can anticipate and look forward to. This is something we can do every day in school. Helen Keller said, Many persons have the wrong idea of what constitutes true happiness. It is not attained through self gratification but through fidelity to a worthy purpose. We talk a lot about results and outcomes these days. What better post-school outcome could we have for our students than preparing them for a life in which they can find purpose, satisfaction, and joy.

In the fall issue of TX SenseAbilities we ran the story of Katy, a teenager from Copperas Cove with deafblindness resulting from CHARGE Syndrome. Katy's intervener at school had very long hair. Upon having it cut she donated her hair to Locks of Love, an organization that uses donated hair to make wigs and hairpieces for disadvantaged children who have lost their hair due to disease or medical treatments, such as chemotherapy. When Katy heard about this, she wanted to donate hair as well. As it turns out, you must donate at least twelve inches, and Katy's hair wasn't near long enough. So she only wanted her bangs cut from that point forward. Every time she went for a trim they would measure her ponytail to see if it had gotten long enough to donate. After three years she made her contribution, and immediately set out to do it again. Now, six years after she learned about Locks of Love from her intervener, she has been able to make two contributions, and is planning to do it again. When asked why, she signs, To help sick girls get wigs. This is purpose, satisfaction and joy.

Mary Scott, our colleague at the Region 3 Education Service Center, recently sent out a link to an article in the Victoria paper about a teenager who was working to become an Eagle Scout. He also has CHARGE Syndrome. The story was about a project he had organized to collect tattered and worn out American flags, and have a dignified retirement ceremony, in which they are respectfully destroyed as specified in the U.S. flag code. The paper reported him saying through his interpreter, We're supposed to honor and respect the flag of the United States of America. We respect the old and worn flags by burning them with dignity. Community service can lead to purpose, satisfaction, and joy.

At this symposium in past years we have celebrated many deafblind individuals who have found opportunities to experience purpose, satisfaction, and joy in their everyday lives: Jaceson, who joined his grandfather in volunteering to visit and lead activities for seniors in a veteran's facility; Chris, who has a job at a factory to makes custom prosthetics; Christian, who started his own business; and LeeAnn, who is trying to single-handedly bring a touch of marine biology to the west Texas high plains in Amarillo with her Shark Center. There are many others.

Jenny Lace, my colleague here with the Texas Deafblind Project likes to remind us to teach students about generosity. This basic building block of a purposeful life is described in Larry Bendtro and Martin Brokenleg's article describing the Circle of Courage-Native American principles for nurturing children.

The four directions of the Circle portray the four developmental needs of children: belonging, mastery, independence, and generosity. The various Native tribes do have many differences, but these four principals can be found in the traditional writings and practices of indigenous peoples throughout North America.

In addition to the students, our theme refers to purpose, satisfaction and joy in the lives of the people who care-family members, teachers, caregivers, and friends. In his article, 10 Things You Can Do to Support A Person With Difficult Behaviors, David Pitonyak includes as number 4: develop a support plan for the person's supporters. In his article he said, Just as it is simplistic to treat a person's behavior without understanding something about the life the person lives, it is simplistic to develop a support plan without considering the needs of the person's supporters. He suggests that caregivers develop support plans for each other. We all have the same needs for purpose, satisfaction, and joy.

So as we plan for our children and our students, we need to plan for ourselves as well. In his Toolbox for Change: Reclaiming Purpose, Joy, and Commitment in the Helping Profession David writes, So take the time to celebrate together. I believe that a great many of our struggles would be easier to resolve if we would just take the time for joy.

There will be a lot to learn here in the next few days. You will find strategies, methods, techniques, and information. You may find some motivation and inspiration as well. As you hear new ideas, we invite you to apply them to our theme: Purpose, Satisfaction, and Joy in the Lives of Students with Deafblindness and the People Who Care. So let me leave you again with Sheela Sinha's words that started my experience in Toronto five years ago:

As we all know, we are here today to rejoice in our common will to give each child 'the right to communicate to his fellow beings' and to celebrate what we have achieved in this direction till now.

References

Bendtro, L. & Brokenleg, M. (2002). The Circle of Courage: Children as Sacred Beings in Schools With Spirit, Nurturing the Inner Lives of Children and Teachers, edited by Linda Lantieri. Boston: Beacon Press.

Bozick, T. (2008). Scouts honor flags in fiery retirement. Victoria Advocate, November 15, 2008.

Hart, P. (2007). Happiness as the Key to Success - But What is Success? Health, Wealth or Wisdom? Proceedings of the 14th Deafblind International World Conference. [CD ROM]. Burswood, Western Austrailia: Senses Foundation.

Pitonyak, D. (2005). 10 Things You Can Do to Support A Person With Difficult Behaviors. Blacksburg, VA: imagine (www.dimagine.com).

Pitonyak, D. (2007). Toolbox for Change: Reclaiming Purpose, Joy, and Commitment in the Helping Profession. Blacksburg, VA: imagine.

Siekierke, B. (2008). Katy Bids Another Ponytail Farewell TX SenseAbilities 2(4). Fall, 2008.

Sinha, S. (2003). Celebrating Communication Around the World. 13th DbI World Conference on Deafblindness 2003 conference proceedings. [CD-ROM]. Brandtford, Ontario: Canadian Deafblind and Rubella Association.

Wiley, D. & Moss, K. (2004). Where is the Joy in This IEP. SEE/HEAR 9(4). Fall, 2004.