NADD Bulletin Volume XI Number 4 Article 3

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Poetry Therapy with Adults with Intellectual Disabilities

Lois Campbell, Ph.D.

Client voice, the opportunity to represent and express one’s own thoughts and feelings, is limited in the everyday lives of individuals with intellectual disabilities.  In therapy, it is especially important to foster client voice, rather than diminish it by solely relying on behavior therapy, where the goals are directed more towards staff than the actual clients.  This study addresses a need for research on therapy with adults with intellectual disabilities, and research on poetry therapy. In this study, 24 adults were randomly assigned to two treatment groups and two control wait-list groups.  Participants enjoyed poetry therapy, expressed their desire to join a group in the future, and told of their plans to continue writing poetry.  The poems were rich with many examples of how the members expressed their thoughts and feelings throughout the groups.  It is a goal of this study to provide an example to counselors, agencies, or mental health clinics of how poetry therapy could be offered to clients who might benefit from an adjunct or alternative to behavioral or traditional therapy.  

Poetry Therapy with Adults with Intellectual Disabilities

People working with individuals with intellectual disabilities maintain a great deal of control over their clients.  For example, clients often have little or no say where they live, with whom they live, where they work, and countless other decisions.  While people with IDD may need assistance in these areas, it is important to include clients’ preferences.  Behavior therapy provides staff with a means of approaching clients and rewarding positive behavior in order to produce the desired result, often defined as a decrease in negative behaviors.  Behavior specialists determine the goals for the clients and how staff will deliver rewards.  Poetry therapy represents a different approach to helping clients.  The goal is to promote client voice, the opportunity to represent and express one’s own thoughts and feelings.  With control lacking in so many aspects of their daily lives, some clients might especially enjoy and benefit from a therapy that fosters expression of thoughts and feelings.  Poetry therapy could be done in addition to behavior therapy or as an alternative to behavior therapy.

Typically, counseling relies on the individual’s ability to express his or her thoughts and feelings; however, individuals with intellectual disabilities are often not well-practiced in this type of verbal interaction.  Poetry therapy has been used with many diverse groups, often populations that experience a lack of voice.  Therapists have written about their poetry group work with children in inner-city schools (Koch, 1970), nursing home residents (Koch, 1970), prison inmates (Maeve, 2000), and adults with developmental disabilities (Davis, 1996; Kahn-Freedman, 2001).  Case studies demonstrate the successful use of poetry therapy in improving self-understanding, expression of thoughts and feelings, understanding of others, and offering a safe place for healing.  Poetry therapists have written about their success in reducing psychological distress (Tamura, 2001), increasing self-esteem (Abell, 1998), and decreasing interpersonal difficulties (Abell, 1998). 

Description of Study

This study used a switching replications experimental design (Campbell & Stanley, 1966; Cook & Campbell, 1979).  Residence Managers and Service Coordinators referred adults who were interested in participating in a poetry therapy group.  The first 24 subjects were randomly assigned to four groups of six.  The four groups were then randomly assigned as two treatment groups and two wait-list control groups.  All four groups completed assessment measures before the two treatment groups began therapy.  After 12 weekly one-hour sessions of poetry therapy, all four groups again completed assessment measures, followed by 12 weeks of poetry therapy for the two wait-listed groups.  A third phase of assessment followed the final poetry therapy group.  An independent researcher administered the assessment measures, without knowledge of who was in the treatment or wait-list control groups.

There was a detailed plan for each session based on the work of poetry therapists who have implemented these plans and written about their effectiveness.  The sources for poetry therapy plans include Koch’s (1977) work with adults in a nursing home, his work with school children (1970), and Kahn-Freedman’s (2001) work with adults with intellectual disabilities.  Poetry therapy involved reading poetry, and writing individual and collaborative poems.  Each participant received a notebook for their poems, as well as typed copies of each poem they wrote and the poems that were read at the beginning of each session. 

Participants had the opportunity to evaluate the poetry therapy experience by completing a simplified version of the Participant’s Evaluation of the Poetry Therapy Experience (Hynes & Hynes-Berry, 1986).  An assistant recorded their responses to eight questions.

Twelve (50%) participants had diagnoses of mild mental retardation, with previous estimates of Full Scale IQs ranging from 51-72, and twelve (50%) were diagnosed with moderate mental retardation, with Full Scale IQs ranging from 38-54.  There were 8 (33.3%) males and 16 (66.7%) females ranging in age from 22 to 58 years of age, with an average age of 34.9.

Information was collected regarding any psychiatric diagnoses and concurrent counseling. Eighteen participants had no Axis I diagnosis; 1 was diagnosed with dysthymia, one with major depression, 2 with mild depression, 1 with bipolar disorder, and 1 person was diagnosed with attention-deficit/hyperactivity disorder.  Nine individuals were also receiving individual counseling at the same time, 1 person was enrolled in individual and group counseling, and the remaining 14 were not receiving counseling.

The poetry therapist followed the same lesson plan for all 4 groups.  All 24 participants completed the poetry therapy groups, with four total absences noted, two for vacation, and two due to illness.  No one person missed more than one group. Participants for this study were adults with intellectual disabilities living in a supervised environment at a support agency located in northeastern Unites States.  The poetry therapy groups were held in an agency building in the evening when no other services were being provided there.  The site was a comfortable setting resembling a living room or den, with a small kitchen and dining room, and a bathroom.  Before assessment measures were completed, all participants or their authorized representatives were asked to sign a consent form. 

Description of Poetry Therapy Experience

Based on the poetry therapist’s and staff members’ observations and participants’ reports, the participants appeared to be excited and enthusiastic about the group from the very beginning through the final meeting.  Many immediate positive effects from the poetry groups were observed.  Participants and their residential staff reported the use of poetry writing between group meetings as a self-calming technique initiated by the individuals themselves.  Participants told how they chose to go to their rooms or other quiet areas to write poetry when feeling upset, and how they chose to write when their housemates were experiencing behavioral challenges that were difficult for them to observe.  Sometimes they would share their poems with friends, family, and staff.  One member told how he planned to share his poetry notebook with a new staff person who had just started working as a way to help them get to know each other better.  A few members would count the number of poems they had written at the end of each group.  Participants often talked about how they looked forward to the group each week.

Many group members wrote poems on their own between sessions, and then brought their poems to the group to share.  These poems covered a variety of topics including holidays, vacations, special interests, friends, and family.  At times, participants copied a style that had been used in the group, for example, writing a color poem.  Members also created their own writing styles, such as list poems, or groups of poems centered on one theme such as sports poems.

Each week the group read a poem by a famous author.  Members received copies of these poems to add to their notebooks.  The members and poetry therapist discussed the poem, its meaning, and at times would define words.  All groups consistently enjoyed a few poems:  “I Wandered Lonely as a Cloud” by William Wordsworth, “This is Just to Say” by William Carlos Williams, and “Butterfly” by D. H. Lawrence.

Each week began with participants receiving typed copies of the poems they had written in the previous week’s group.  The therapist read each person’s poem beginning with the title and author’s name.  Occasionally, participants read their own poems, but most often, the therapist read all the poems.  The poetry therapist varied the look of the poems by using colored paper, stationery, colored ink, and clip art, for a unique presentation each time.  This touch added a special sense of anticipation to the opening each week.  Some members began to incorporate this feature into their writing by requesting a particular paper color, and describing what clip art pictures they would like on the page, as well as where to put the picture on the page.  Members had definite preferences for how their names should appear at the top of their poems, some with middle names, using full names, or their nicknames.

An important task was choosing a title once the poem was complete.  Individuals seemed especially fond of this moment and would consider the title with a good deal of thought.  One member who gave each poem the name of an animal, enjoyed the laughter of other group members each week when he would choose an outrageous title that had nothing to do with the poem itself.

Participants frequently offered suggestions to each other as they wrote, and were very respectful of one another, sometimes choosing to use a word that someone had offered, and sometimes thanking them, but making a different word choice.  The therapist made it clear from the beginning that they could help each other, and this was well received.  The first week individuals were surprised by other members offering them suggestions, but then quickly realized this was helpful and respectful, and so it became normal practice.  They praised one another, laughed together, and offered condolences.   No one criticized another person or their poems in any of the groups, although they did at times write about people outside of the groups with whom they were having trouble getting along.

Participants Enjoyed Poetry Therapy

Participants reported enjoying the poetry therapy experience.  Individual’s comments on the Participant’s Evaluation of the Poetry Therapy Experience (PEPTE) were examined for positive versus negative responses.  An assistant asked participants questions about the poetry group, first using a Likert-type scale for four questions, where 1 indicated the most negative response, and 5 was the most positive response, for a possible score of 4 to 20.  Scores ranged from 17 to 20, with a mean of 19.8.  Participants did not list anything when asked what they did not like about the poetry group.  Participants were asked what they liked best about the poetry group.  Some examples of their responses were “it felt good,” “writing poems,” “nice paper,” “I liked it small,” “I liked the poetry,” “she makes me copies,” and “I liked the poetry group.”  Many participants mentioned liking the poetry therapist, and some identified individual poems they had written that they liked best about the group.  Participants were asked if there was anything else that they wanted to say about the poetry group.  The typical response was “I just want to do it again.”  Members indicated that they would continue to write poetry: “I will keep writing poems even without.” 

Participants were asked “what did you learn from being in the poetry group?” while completing the Participant’s Evaluation of the Poetry Therapy Experience (PEPTE).  Examples of responses include “I like to write,” “I liked meeting new people,” “I want to share my poetry with other poets,” “sometimes I write about my feelings,” “when I have problems I can write, talk,” and “writing about things is good.”   Some participants did not have an answer for this question.

Participants Expressed Their Thoughts and Feelings

This study produced a large volume of poems.  There were many themes that emerged, and common means of expression used by the various participants.  These are described below supported by poetry examples of group members using pseudonyms.  The poetry therapist developed these non-inclusive categories as one means of conveying the scope of group poetry therapy, and assisting readers with gaining insight into the poetry therapy experience.

1. We have the same feelings as people without intellectual disabilities.

“I feel guilty eating Snickers bars and Nestle Crunch bars” Ellen

“I would like my boyfriend Charlie to give me red tulips for my birthday” Emily

“I hate bucking the Christmas season, deciding what to get each person on my list. I hate walking around in long, rude malls, with all the crowds around me. I would like to have a juicy cheeseburger now, after shopping” Gary

“It makes me sad that they’re divorced” (writing about his siblings) Sam

We express our feelings very well in poetry.

“I am a goat in love, walking in a field looking for a billy goat” Cary

“I feel cheerful like a dog jumping and playing with friends” Dan

“I remember when I was learning how to bat. I hit a ball through the window. My mom was drinking coffee. I felt ashamed. My mother said ‘what are you doing?’ I think it startled my grandparents too. I had good strength in one hand. I enjoy playing sports a lot, and I’m physically challenged. Each person has challenges and we need to look at how we related to people in general. If you could see the confidence in me, everything used to come out wrong, and they didn’t pay attention to what I had to say.  I can talk to staff and feel so much better about myself. People don’t understand how I feel inside until they’re in my situation” (memory poem) Gary

“Life has many challenges to face each day. Lord, I put on a happy face, but sometimes I am crying within” Gary

“I say thank you, that makes me feel good inside my heart. I am in a good mood about myself” (writing about being complimented) Chris

3. We have important things to say that we want others to know about us.

“Sometimes I talk to myself to feel calm&ldots;I like to spend time by myself” Chris

“I feel calm listening to music on my headphones at bedtime” Noah

We write about the things that are important to us, that make us feel good: music, sports, plants, animals, nature, writing, and God.

“I like music because it is good for me” Emily

“My plants are pretty. They make me feel good. They look healthy because I water them every week. I always take care of them; I don’t want them to die” (from Ode to My Plants) Marie

“I feel great writing my thoughts out, feeling that I can reach to the sky” “In my room I write these things down. It might not mean anything to anyone else, but it makes me feel better” Edward

We need friends.

“I’m trying to get a new home with more peers to talk to and get a relationship going” “I have no friends outside my house. I’m trying to get a friendship going in poetry group” “My best friend was&ldots;he was the school teacher in my high school” Dan

We can be funny, silly, and a lot of fun.

“I like to sit in the dark like a black bat in my purple room” (color poem) Becky

“I like the cold, white snow when I am inside looking out at it” Sam

“I like fat pine trees with pine cones falling on Gene’s head” Jill

“We were at the ATM more than any place else&ldots;if anyone wants to go, just go, but bring your checkbook along” (describing a European vacation in his life journey poem) Gary

“I was running around kissing guys when I was little” (life journey poem) Chris

The collaborative poems tended to be especially humorous.  In one poem, the group first invited friends to the perfect party which included great food and fun activities, and then invited people to an “awful party” which offered liver and fish, and games and activities that got out of control.  In another invitation poem, members invited each other on a trip around the world which combined their various interests in places and types of travel, resulting in a whirlwind vacation of diverse activities such as visiting Liberace’s museum, swimming in Florida, and ending at the North Pole in time for Christmas.

We use poetry to express feelings of grief and loss.

“I want to say goodbye to my mom and dad. I’m thankful for my parents watching over us” Ellen

“At Springdale I take care of all the animals. And two animals passed away. Their names were Ethel. Ethel is a pig. And Princess is a big, white kitty cat. I was upset to hear that” Emily

“And all I wanted is for you to live. I have to remember that I don’t have the power to keep someone alive. Sometimes I feel greedy. I love God and I believe in Him, but I wanted you” Jane

“My brother’s name is&ldots;He was 25 when he died in a sledding accident. He called me his red-haired girl” Cary

Staff are very important to us.

“I had a very special bond with &ldots;I will always have a special place in my heart for her.  When staff leave, it really hurts and sometimes it feels like they don’t want any part of us because they’re not coming back. I have to remember that staff have family too, and kids, and go back to school, I don’t know. It’s like they have something better to do” Jane

Participants often included staff in their poems, typically writing words of appreciation, but also expressing frustration with inconsistencies, staff turnover, and their uncertainty regarding the boundaries between staff and themselves.

It is easier to say some things in a poem, and we sometimes insert significant phrases into our poems.

“I want to say I’m sorry” (towards the end of the color poem).  “I am not a liar or a thief, and I do not talk to strangers on the street” (apparently these behaviors at some point had been discussed with her). Cary

We have good and bad memories that we like to write about.

“My father was always doing something for somebody” (this was the last line of the music poem; participants had been listening to a hymn) Gary

“I had a seizure when I was little&ldots;My teacher asked me a question, and I answered it right, and I won a Buffalo Bills hat” (life journey poem) Noah

We are concerned about others

Over a few weeks, one participant wrote lines about his brother’s job search, when he got the job, and then how the job was going.

We express ourselves well in poetry.

“I was born with Down Syndrome, but the doctor never told my parents. I always wanted to be just like my sister, like going to college. But I can’t do certain things because I have Down Syndrome, and I’m different than my sister; I don’t mind being Down Syndrome; I like myself the way I am. My mom told me I have one chromosome that made me really special. I always wanted to drive a car and take a nursing assistant class, but my mom said it might be too hard” Jane

“In the war zone, everyone battling everyone, instead of a team zone. Let’s get together, people. Have a good attitude. In the team zone, we want to work together. United, instead of divided. That’s the way I feel” (describing life in a group home) Edward

“I lost my outing for nothing. But I talked it out with staff and they told me to forget about it. It is done and over with; it is in the past, and don’t worry about it. Make healthy choices from now on” (she often wrote about her behavior support plan, the reinforcement, and consequences) Chris

We write great poetry.

 “Summer, I love your beaches and tanning in your sun. I like your cold oceans with lots of waves. I like the pretty girls. My brother was married in August to Donna. Summer, you are good for picnics with hot dogs, hamburgers, baked beans, french fries, potato chips, and pretzels. Happy Fourth! Take a walk in a parade. Summer, you are best when very hot” (season poem) Sam

“Pretty trees, pretty flowers, pretty bushes. Cute pumpkins, cute ghosts, cute leaves. Sharing apples, applesauce, and pumpkin pie. Mom and Dad making the turkey. Indian Summer in the fall” (season poem) Marie

“In Fall, I like the leaves, changing colors and falling. Thanksgiving and Halloween. In Spring, baseball starts up April, 15. The birds come back. In Winter, I like making snow angels and snowball fights. My birthday is Monday, December 11. In Summer, I like that it’s hot. I am going to Kansas City June 5th with Peter on vacation.” Noah

Conclusion

Behavior therapy is the predominant approach for working with adults with intellectual disabilities; however, the techniques, interventions, and goals are directed more towards staff than the clients.  Client voice, the opportunity to represent and express one’s thoughts and feelings, is limited in the everyday lives of individuals with intellectual disabilities.  In therapy it is especially important to foster client voice.  Poetry therapy is an ideal choice for fostering client voice.  Participants enjoyed poetry group therapy, expressed their desire to join a group in the future, and told of their plans to continue writing poetry.  The poems were rich with many examples of how members expressed themselves throughout the groups.  The most exciting outcomes of the poetry groups were not necessarily expected beforehand.  Participants told how they were using poetry as a self-calming technique, a coping mechanism, a means of communication, and tool for saying difficult things.  Members wrote in-between groups.  They used poetry to share their feelings with others, to organize their thoughts about matters, and many other creative and therapeutic uses.  There are many possibilities for poetry therapy as an adjunct or alternative therapy with individuals with intellectual disabilities, with individuals experiencing a lack of client voice, or those interested in pursuing a creative arts therapy.

References

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