God loves us, no matter what our gifts
10 MINUTE READ
“For you made all the delicate, inner parts of my body and knit me together in my mother’s womb. Thank you for making me so wonderfully complex.” (Psalm 139:13-14a. NLT).
The Bible teaches us that children are a gift from the Lord (Psalm 127:3). He forms every child (Psalm 139:13-16) and plans their future (Jeremiah 1:5). This includes children with disabilities.
Over time, many are now living much longer lives.1 Parents of children with disabilities often worry, “Who will support and care for my child when I can’t?” Afterall, “The deepest need of a human being is to love and be loved, each person has a right to friendship, to communion and to a spiritual life”.2
This principle is exemplified in the L’Arche3,4, Camphill5,6, and Bruderhof7 communities which are prayerful Christian faith-based communities who trust in God. They house, nurture and educate individuals with developmental and intellectual disabilities. These individuals remind us that God loves us, no matter what our gifts (Ephesians 3:18-20).
Spiritual Care And Nursing
In healthcare, nurses have attempted to include spiritual care into their practice model. One of the main obstacles that Registered Nurses (RNs) must overcome when addressing and implementing spiritual care is “the lack of comfort and language regarding discussing, evaluating and expressing matters of the spirit or soul”.8
In Australia, like the USA, Canada and Great Britain, tools to measure spirituality and religious belief are needed in languages other than English to assess “the diverse ethnic and cultural groups given the multicultural healthcare taking place worldwide”.8,9 The Australian nursing profession has developed some tools that support cultural competence and spiritual care. For example, respect for Aboriginal and Torres Strait Islander (ATSI) people requires acknowledgment of connection to country, their traditions and cultural practices.10
As health practitioners, we are aware that health is a state of complete physical, mental, social and spiritual well-being and not merely the absence of disease or infirmity.11 This statement aligns with the International Code of Ethics, which RNs adhere to in their practice. Moreover, there is also the Australian National Standards Assessment Tool (ANSAT).12 An ANSAT assesses undergraduate nursing students’ understanding their implementation of “meeting individuals’ cultural and spiritual needs”. Nursing students require sensitive direction on how to conduct such an assessment. This statement comes from personal observation of dozens of nursing students, over more than four years of disability nursing experience (2015-2019). The Australian College of Nursing (ACN) Position Statement on Person-Centred Care13 further acknowledges cultural and spiritual beliefs as a component of holistic care. These suggest that spiritual beliefs should be addressed by healthcare practitioners8,9 with permission, sensitivity and respect. Understanding each person’s spirituality is no longer optional, even if it simply means building a relationship of trust. For children with special needs, the relational aspect is what stands out as being special. That rapport builds on their feelings and their spirit, and a carer’s intentional presence is vital.
“The deepest need of a human being is to love and be loved, each person has a right to friendship, to communion and to a spiritual life.”
From 2006-2016 RNs could apply their Competency Standards (CS) which stated that RNs provide “social, cultural, physical and spiritual care….”14,15, but these and other elements that addressed the non-verbal communication of those with an intellectual and/or developmental disability (IDD) have been removed from the current NMBA Standards for Practice. As a result, contemporary RNs are generally not trained to correctly assess and assist individuals with spiritual distress, nor are RNs prepared to assess and address the spiritual needs of children with IDD. The literature illustrates the importance and application of spiritual care to those who are non-verbal. Some have also demonstrated that RNs who address this in a person-centred way show a more purposeful direction in holistic care.16
Spiritual distress assessment tools validated for palliative care are transferable and can be applied to other health specialties. The tools are inclusive of all faiths, therefore can be used without fear of offence.17 RNs are refocusing on the importance of meeting the spiritual needs of all patients, including children with special needs, because evidence suggests that the spiritual aspect of care has a clear and positive bearing on health outcomes. Current tools must be reviewed regularly, with teaching strategies and new tools put in place to support this aspect of care. Discussions on the need to educate nurses who provide hope are also necessary.
Learn From The Past
Nurses who have provided direct, daily and continuous care and support to individuals with disabilities have valuable insights. Many have trained in centres, such as Stockton Hospital, near Newcastle, with a complex mix of patients; some with mental health issues, others with intellectual disability. From about the 1970’s, the authorities separated health from disability. Stockton became a specialist site for people with IDD.
In those days, trainee nurses striving to attain a Certificate in Mental Retardation (as it was called at the time) started work on wards with 30-40 people housed in a dormitory. The morning shift nurse went down the rows saying, “Come on up, you have to go.” The beds were dirty. The patients were put in showers where they were hosed down. It would have shocked and horrified anyone. Most of the patients had to be dressed, all were ambulant, many non-verbal, some worked. No spiritual care was provided.
The “cripples ward” cared for patients with cerebral palsy or hydrocephalus. Many staff chose to stay in those wards but care was rudimentary. Mats on the floor, lunch on the floor. In those days nurses did not have gloves or disposable nappies, but people did care.
Other patients had chronic Shigella and diarrhea which provided a vehicle for Hepatitis A infection. Their clothing was often soiled. These children were aged 5 to 12 years. It was inevitable that staff got sick.
Despite their physical conditions, people with disabilities needed others to love them and Christian nurses made a big effort to be friendly and loving for God. Some patients responded.
“RNs are refocusing on the importance of meeting the spiritual needs of all patients… evidence suggests that the spiritual aspect of care has a clear and positive bearing on health outcomes.”
People with IDD also required education. The Richmond Report (1983) resulted in closing institutions and recognizing their rights. This process took 50 years. The Warnock Report in England had led the way in working towards this goal. The training model had been developed in the 1970’s. The inaugural day for people with disabilities only came about in 1981.
The Marsden Centre in Sydney was based on a Scandinavian model, with a gym and a school. Most of the children did grow up. There were not many deaths. There was always the challenge of how to care for a baby born as a non-viable child. Some parents and health professionals felt they had to try everything, with the co-ethical concept of allowing a non-viable child to be supported and kept comfortable to die a natural death. Sometimes, parents would reject a child with special needs because the child wasn’t perfect, perhaps out of guilt, fear of the effort required to care for them, or fear of others’ opinions.17,18
Families with children with disabilities often did not have many resources or support. Having to deal with one or more children with disabilities meant they had to adjust and adapt. Dealing with difficult behaviours is another challenge. These families were helped by L’Arche and Bruderhof communities and their concept of “growth into a Christian faith”, as promoted by Rudolf Steiner. In the late 1970’s, Jean Vanier came to Australia and set up a retreat in Morriset. He spoke on L’Arche and people with disabilities living together.19-21
Bruderhof is another community that supports people with disabilities. In this community, each person with disabilities is recognized as a valued, cherished gift from God. Each person is cared for inclusively throughout their life. Youngsters in the Bruderhof learn to work with and support children with disabilities with as much social participation as possible, which often touches them greatly, and provides growth and life experiences.20
Jesus said, “If you love me, feed my lambs” (John 21:15). This is a big call, and very significant. Just because He knows us does not mean he designed people with disability. There are flaws of nature. Jesus spoke to the people about the man who was blind so that things would happen. People are evolving to work more with God. All things are working together for good. “But to all who received him and accepted him, he gave the right to become children of God,” (John 1:12).
At present, children with special needs have more opportunities to mature and demonstrate that they, as John confirms in his first epistle, “Are already children of God,” (1 John 3:1-3).
The testimony of Anne Finaughty highlights the importance of supporting and caring for individuals with disabilities, while allowing each one to flourish uniquely: Community life allowed Anne’s creativity to blossom.
Reproduced with permission from Another Life is Possible, Clare Stober, Plough Publishing House 2020, p.154 (Anne Finaughty 1961- )
Before joining the Danthonia Bruderhof in Australia in 2009, Anne, who has complex physical disabilities, spent up to 19 hours a day sleeping, and her waking hours in front of the television. Despite her welfare cheque, she was always short of money, and hated her work in a shop for people with disabilities. “It was like a prison. Horrible. Dead boring.” Over time, she longed to put an end to it all, “I was literally waiting to die.”
Today, Anne is often up at five in the morning, and runs a card and sign-making business that she calls “Joy is Love”. She has produced hundreds of colourful greeting cards, door signs and wheelchair tags. Some she sells, but most she gives away. Her goal? “To share the happiness I’ve found by cheering up and encouraging others.”
Through allowing her creative side to blossom, Anne has found the freedom to be herself, and affirmation in sharing her gifts with others: “Painting has helped me by relaxing me and getting me out of myself. I still have my ups and downs, but the miracle is that through my artwork, I can always find joy. It might be hidden somewhere down inside me but it always comes out, eventually.”
Asked if she’s still waiting to die, she scoffs: “I gave that up, thank you very much. I do not want to die!”
To see Anne’s artwork, go to: www.anotherlifeispossible.com/themes/looking-for-freedom/anne-finaughty
We, in healthcare, especially nurses, have the responsibility to ensure spiritual care is integrated into our practice; not just for some patients, but for all, including people with special needs.
These children of God are deserving of our unconditional positive regard and support. Current models of care for children and young adults with disabilities, who often have complex health needs, are based on personhood and the value of the person.3-6,22 Jesus also taught his followers to accept and create relationships with those who society marginalises (Luke 14:12-14).
“And now dear children, remain in fellowship with Christ so that when he returns, you will be full of courage and not shrink back from him in shame. Since we know that Christ is righteous, we also know that all who do what is right are God’s children (John 2:28-29).
The author kindly acknowledges Lindy Howard’s contribution to this article. Lindy is a retired Registered Nurse who gained her first certificate as a Mental Retardation Nurse, in 1974. Lindy also has tertiary training in Theology. She spent time in England and Europe visiting Christian communities that care for children with special needs, such as L’Arche and Bruderhof. She spent more than ten years working with children and young adults with disability. Lindy lives with her husband in Murrurundi and they are both active in pastoral care.
Georgina Hoddle Georgie is a registered nurse with experience in orthopaedics and trauma, ageing and disability. She spent four years working as a disability nurse educator in Sydney before semi-retiring in the Hunter region. Georgie currently works for a Federal Government accredited agency in COVID-19 prevention. Georgie is the Vice President of Nurses Christian Fellowship Australia and trains Christian healthcare workers to be witnesses to Jesus Christ through the Saline Process. She is also co-author of the new course Spiritual Care for Australian Nurses (SCAN), endorsed in 2021 by the Australian College of Nursing.
- MacKinlay, E. New and Old Challenges of Ageing: Disabilities, spirituality and pastoral responses. Ageing, Disability and Spirituality. 2008; Chap.4 p.12.
- Federation of L’Arche (1993) Fundamental Principles 1.
- Vanier, J. Community and Growth. Saint Paul Publications. Sydney. pp.1-252 (original title: La communaute: Lieu du pardon et de la fete. 1979 Les Fleurus, Paris).
- Glass, E. The particular needs of older people with intellectual disabilities and their carers: A perspective from the experience of L’Arche. In: Ageing, Disability and Spirituality (ed.) E. MacKinlay, 2008; Chap.5, p.12.
- Woodward, B. Spiritual Healing with Children with Special Needs. Jessica Kingsley Publishers. London, Philadelphia. 2007; pp.1-160.
- A Portrait of Camphill. From foundling seed to worldwide movement. (2012) Ed. JM Bang. Floris Books. pp.1-246.
- https://www.bruderhof.com (accessed 1 August 2021).
- Sessanna, L, Finnell, DS, Underhill, M, Chang, Y-P, & Peng, H-L. Review paper. Measures to assess spirituality as more than religiosity: a methodological review of nursing and health-related literature. 2011.
- Fawcett, T.N. & Noble, A. The challenge of spiritual care in a multifaith society experienced as a Christian nurse. J Clin Nursing 2004, 3:136-142.
- Gee, G., Dudgeon, P., Schultz, C., Hart, A., Kelly, K.. Aboriginal and Torres Strait Islander social and emotional wellbeing. In: Dudgeon, P. Milroy, H. Walker, R. (Ed.), Working together: Aboriginal and Torres Strait Islander mental health and wellbeing principles and practice 2014. 2nd ed., pp.55-68). Canberra: Department of The Prime Minister and Cabinet.
- Fifty-first World Health Assembly, Geneva, 1998. https://www.who.int/whr/1998/en/whr98_en.pdf.
- Ossenberg, C, Dalton, M, Henderson, A. Validation of the Australian Nursing Standards Assessment Tool (ANSAT): A pilot study. Nursing Education Today 2016; 36: 23-30.
- Australian College of Nursing Position Statement on person-centred care. 2014.
- Australian Nursing and Midwifery Board. Competency Standards for Registered Nurses 2006. http://www.nursingandmidwiferyboard.gov.au – (retired) – retrieved 9 June 2015.
- Hoddle, G & Macaulay, G. Spirituality, nursing and people with intellectual and developmental disability. J Intellectual Disability Research, 2016 :683 (abstract).
- Elk, R., Hall, EJ., De Gregory, C., Graham, D., & Hughes, B.P. The role of nurses in providing spiritual care to patients: An overview. The Journal of Nursing. 2017 American Society of Registered Nurses.
- Hoddle, G, Macaulay, G & Marshall D. Spiritual Care for Australian Nurses. A course designed by Nurses Christian Fellowship Australia; endorsed by The Australian college of Nursing, August 2021.
- Best, M. Fearfully and Wonderfully Made. Ethics and the beginning of human life. 2012. Matthias Media.pp.250-251.
- Vanier, J. Our journey home: Rediscovering a common humanity beyond our differences. Trans. M. Parham. 1997. London: Hodder & Stoughton.
- Swinton, J. Known by God. In H. Reinders (Ed.). The paradox of disability: Responses to Jean Vanier and L’Arche communities from theology and the sciences. (pp. 140-153). 2010. Grand Rapids: William B. Eerdman.
- Burghardt, M. Brokeness/Transformation: Reflections on academic critiques of L’Arche. 2016. Disability Studies Quarterly, 36(1).
- https://www.bruderhof.com/en/life-in-community/caring-for-each-other. accessed 15 August 2021.
The Holy Bible, New Living translation. 2nd Edition, 2012. Tyndale House Publishers, Inc. Carol Stream, Illinois.