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Disability, Nepal and F-words

What better a start for a blog than to write about something that has been researched over more than two decades in the field of disability. F-words are concepts that Professor Peter Rosenbaum and Professor Jan Wilhem Gorter from CanChild in Canada have so cleverly put forward that can be memorized and used in everyday life when we come across people with disabilities (PWD) as caregivers, therapists, teachers, scientists and others who are intertwined into the lives of PWDs.

Let’s begin our journey from what we currently understand and how we practice in the immediate environment of the PWD in Nepal. Many current practices in Nepal are based on old concepts and they no longer serve the needs of the families with disability. There are many factors such as financial limitations and cultural limitations and gaps in knowledge which prevent optimal practice in health care to this group of people. This article will help bridge this gap in health care and create awareness regarding the optimum type of services to be expected by the family members and consumers.

As a physiotherapist interacting with children with disabilities I myself do understand that most of us enter this field of rehabilitation thinking that we can “fix” people with disability. Or to be more precise, we want to “cure” the conditions. This is a “Biomedical” model which if applied to an acute condition makes sense. I myself have struggled thinking and practicing these “curing” techniques on my clients. However with time, I have come to realize that there is so much more to it.

The much clearer picture emerged when I came across this paper by Professor Rosenbaum and Professor Gorter (see the reference link to the article below). It made me realize the necessity of leaving the “Biomedical model” concept behind and moving forwards towards a better service provision model being embraced today in the field of Disability. The authors very cleverly coins the term “F-words” to the main important aspects of this model to give a concise picture of what we need to know. I am sharing these F words with the twist of culturally modified examples for our context. My hope is that in the near future, Rehabilitation in Nepal will be very closely linked to these Famous F- Words.

First F- word-Function:

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Let’s meet Pooja. When I was a practicing my skills as physical therapist in my early career, I met this wonderful girl with CP who was very sharp and clever. There were no aims put forward by the caregiver mother, which is very unusual in Asian culture. So, I devised my own goals and treatment plans for Pooja and worked hard on her hand function and walking. This, according to me, was the most important aspect of her therapy. After all, I was working on FUNCTION. The child was fun and easy going, cooperative. All my effort, I thought, was working on “Function” but actually I was working on trying to make the movements of Pooja normal. That is, I was trying to normalize her movements. As I worked on the “Looks” of how Pooja performed different functional tasks, the caregiver also became more and more directed towards making her daughter “Look” as much “normal” as possible. At one point, although I realized that Pooja’s movements had become better, but Pooja was only focusing her attention in looking normal and she achieved LESS function by doing so- trying to be like others. In fact this created immense stress to Pooja and her family. They constantly worried about why their child could not be normal like other children.

By working this way this is how we, as health care professionals, contribute to the damaging view of “Normal” versus “Abnormal” in our society. What would have been a correct and more fruitful approach for Pooja? What would have made my goals more “functional”? What actually does the “word” function mean to us? to the child? or even to the caregiver? Function is when we think it in terms of the child, family or caregiver without focusing our attention on the “looks” of any activity. Focusing on what the child can actually do in his or her own way. This seems to be the best approach to learning and moving forward towards the goal of being functional!

Second F-Word-Family:

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Let’s meet Lalimaya. She is almost a young adult with cerebral palsy. She can communicate with her family members and loves to be with people. Again here, her mother is the one who takes on most of the responsibilities of her daily needs: feeding throughout the day, toileting, bathing, changing her position, doing the exercises taught by the therapist, performing various treatments suggested by many other health professionals she has come across throughout Lalimaya’s life, from birth till now. And remember, she is also a working mother, she cooks for the family of five and tries to meet all the social obligations of Nepali culture.

In Lalimaya’s story, what do you think the second-word Family signifies? Here, it’s not only Lalimaya that we focus our attention on. As we come across families like Lalimaya’s, we come to understand that the family with a child with disability has many more challenges in addition to the worries about the child. There are many aspects of their own lives that are jeopardized with the additional responsibility of the child with disability: restrictions in social activities, job opportunities, relationship with the spouse, emotional wellbeing and depression. An important aspect of taking care of the child is the ability to manage oneself. We, as the health care professionals responsible for supporting the lives of children with disabilities should be aware of the whole family and provide the necessary resources to help the family as a whole. In this case arranging time-out for the mother and encouraging the other family members to slowly share the responsibilities in care would reduce the mothers stress which then helps the child.

Third F- word – Fitness:

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Let’s meet Ayush. He is a smart kid with many interests like listening to music, watching TV and eating. He could roam around the house commando crawling and could speak few words. He would get whatever he wanted especially in his high class family with loving older siblings. However, as the years passed by he put on a lot of weight and eventually needed much help to be moved around even inside the house. For decades now, we have understood that children with a disability are less physically fit than the children without disabilities. In developing nations, lack of physical fitness has been overlooked as there are other pressing issues to deal with like awareness of disability cards, awareness about importance of therapy services to prevent secondary impairments, addressing social stigma and changing community understanding about the causes of a child’s disability. Studies show that these children need a special kind of physical activity for their fitness and that it needs to be specific for the individual child. Our role here could be to encourage the family different ways to help Ayush stay independent in the things he can do for himself, particularly in moving himself around. Hopefully at one point we would be able to devise a creative individual fitness plan for Ayush which need not be a boring exercise routine but part of a social and recreational activity so he can be motivated to remain fit.

Fourth F- word – Fun:

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Picture from Google images

 

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To quote the author of F-words again “It is in doing rather than a superior level of accomplishment, that is most meaningful to most children”. Let’s meet Tilak. Tilak is a bright kid of only two years who loves to watch cartoons and listen to songs. His favourite song was “Sheela ki jawani” (a popular Bollywood song) which he would rave about in every therapy session. Tilak has cerebral palsy. Early goals for Tilak was to be able to keep his balance for few seconds while standing. He was very scared and would hide behind his mother when he knew what I was up to. Though he would love the whole session he despised me for making him stand by himself. This continued for some time, when finally one day we saw him standing in front of the TV by himself trying to copy the moves to his favourite number that was being played. This didn’t last for long but it was a lesson for all of us. Therefore what we should not miss while focusing on the child is :

  • Find out what the child really likes to do and focus on trying to adapt the goals to his or her interests
  • We need to stop worrying about whether he is standing normally like other kids
  • He can then use this newly developed skill to participate in activities he wants to do so he can have fun !!

Finally the 5th F word- Friends:

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Let’s meet Aakanshya. She is a wonderful teenager with cerebral palsy who is currently in mainstream school. My aims for her used to be mostly decided by herself or her grandfather who was very supportive of her abilities. One day when we were working on her cycling skills, she seemed less motivated and a bit low. We left the therapy session to talk about what was bothering her. I learned from her that she was often left on her own at school as she could not keep up with the rest of her classmates with various activities. She couldn’t tell her family members because she was scared that they would complain to the school administration and she would then stand out in the class, yet again. What we decided to next was very exciting. We decided to call a few of her close friends for the next therapy session and have them observe on how much effort Aakanshya had to put to achieve what she had achieved so far. That day was very thrilling for her since she could show them the effort and her achievements. For me it was challenging because I had to answer a bunch of teenagers. My responsibility was huge, I had to change the way they saw Aakanshya. By doing this I was one step ahead to ensure quality relationships for Aakanshya outside the safety of her home. As a therapist, I do not primarily need to think about all these things, but I did and I think we all should. As Professor Rosenbaum so clearly identifies in his article, “We need to consider what can be done to encourage, empower and enhance children’s opportunities to develop and nurture meaningful peer connections.” Wiegerink et al (2010) also points out that being involved in peer group activities and opportunities for dating, is more important than a person’s disability or level of education, for developing romantic relationships and sexual activity once a child with CP reaches adolescence and young adulthood.

Perhaps next time you are in the therapy room or at a child’s house or in a school, you might ask yourself: As a therapist do I really focus on function, family, fitness, fun and friends so that the children I work with can develop a meaningful rather than a “normal” Future?

Author:

Deepa Bajracharya, Physiotherapist, Nepal

Email: deepa.bajracharya@gmail.com

References:

P.Rosenbaum and J. W.Gorter, (2012) CanChid Centre for Childhood Disability Research, McMaster University, Hamilton, ON, Canada, and NetChild Network for Childhood Disability Research, Utrecht, the Netherlands. The ‘F-Words’ in childhood disability: I swear this is how you should think! Child: Care, Health and Development, doi: 10.1111/j.1365-2214.2011.01338.x. Epub 2011 Nov 1.

http://canchild.ca/en/ourresearch/f-words-childhood-disability.asp

Wiegerink, D. J., Roebroeck, M. E., van der Slot, W. M., Stam, H. J. & Cohen-Kettenis, P. T. (2010) South West Netherlands Transition Research Group. Importance of peers and dating in the development of romantic relationships and sexual activity of young adults with cerebral palsy. Developmental Medicine and Child Neurology, 52, 576–582.

Acknowledgements:

To the children who let me be there in their lives.

I thank “Relief Assistance Home” for capturing such lovely pictures of Ms.Leeza Bajracharya.

Much appreciation to my mentor and dear friend Bridget O Connor for her constant encouragement and support.

Disclaimer:

Though the article is based on true life events which occurred both in India as well as Nepal, the names of the children has been changed to protect their privacy.The pictures provided are as an example to what each paragraph tries to explain. Pictures do not correspond to the actual children mentioned in the article.

7 Responses

  1. nibha

    Deepa, it is a lovely and insightful article.
    The F words explaind is full of expressions of the actual needs .
    loved reading it.
    regards,
    nibha

  2. Pranay

    Hello Deepa,

    A very well written article. I would like to thank you for translating Dr. Rosenbaum’s & Dr. Gorters idea for Indian and Nepalese parents in their context. Please keep up the good work.

    Best
    Pranay

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