The Impact of Parent Voice in Fundraising Initiatives for Non-Profits that Support Children with Varying Abilities: An Empowering Approach to Fundraising



Author

Andrea N. Sorley, University of Calgary, Community Rehabilitation and Disability Studies, Calgary, Canada

Email: Andrea Sorley

Introduction

This piece will discuss my experiences working with a non-profit organization on a fundraising initiative during my two-hundred and sixty hour practicum with them. I will go into depth about how impactful family narratives can be in shaping positive perceptions about children with disabilities and how these narratives can pose as an alternative to fundraising initiatives that utilize the charity model of disability to gain funds. I will also discuss the challenges of maintaining a balance between expressing a need for funds, while also promoting these children and their families as capable. This piece aims to present a new model of fundraising that steers away from further stereotyping life with a disability, by promoting the empowerment and potential of children with varying abilities through real life experiences told by the families themselves.

Keywords: disability, family narratives, empowerment, potential, fundraising, non-profit, charity model of disability

My Practicum Project

For my practicum, I worked with an organization that provides home and/or community based education and therapy programming to preschool-aged children with diverse needs. During my two hundred and sixty hours with them, I helped run their annual fundraising gala, as well as revamped their fundraising letter and sponsor package. Throughout this project I struggled with creating a compelling letter that encouraged sponsors to donate yet did not paint a charitable model out of a very capable group of children. Through a charity model lens, disability is portrayed as something that is socially undesirable and correlates disability with poverty, family abandonment and social vulnerability (Griffo, 2014); this model creates the perspective that persons with disabilities are people to pity and undermines their abilities and potential. Even if it just in fundraising initiatives, the portrayal of people and children with disabilities as incapable will continue to feed the stigma surrounding disability and contribute to the societal barriers that prevent equal opportunity for the disability community. Therefore, I wanted to create a fundraising letter that celebrated the potential and successes of the children, which donors could be a part of. I also wanted to incorporate parent voices in the letter to create an authentic representation of the company’s work and to give these families the opportunity to accurately represent themselves and their child in a fundraising initiative that reaches a variety of people and ultimately shapes the perception of people and children with disabilities.

Parent Voice in Fundraising

In order to better understand the impact that parent voice can have I wanted to discuss the article, “At the Margins of Moral Personhood” (Kittay, 2008). In her article, Eva Kittay writes a very persuasive piece that talks about how people, who are severely cognitively impaired, are excluded from moral personhood and challenges the idea that killing them is less wrong than killing those who are not severely cognitively impaired. What separates this piece from many other articles is the addition of her experiences raising a daughter, who is diagnosed as severely cognitively impaired (Kittay, 2008). Along with theories and scholarly articles, Kittay (2008) uses her narrative to argue for better resources and expectations for people who are diagnosed as severely cognitively impaired. The piece manages to create empathy for, while also promoting the potential of, people who are diagnosed as severely cognitively impaired and their families; therefore, I would like to argue that we can use a similar model to create empathy, promote potential and paint a more positive view of disability, while also persuading financial support in fundraising initiatives.

It is no surprise that parent voice and participation is a key component of positive outcomes for children (Kuo, Bird & Tilford, 2011). The idea of parent inclusion is becoming more and more prominent in pediatric health, education and overall child development and parents are being recognized as the expert of their child over professionals (Denman, 2014). A parent’s voice is becoming an integral part of informing professionals about strategies, interests and capabilities of their child that make a significant impact in the professionals quality of practice (Denman, 2014); therefore I think that this same information can impact a sponsor or donors inclination to give financial support to an organization that has had a positive impact on the families it serves. When parent voice is included in a fundraising initiative, sponsors and donors are able to see the barriers that these families face and see how the organization helps to support the family in overcoming these barriers; this triumph becomes an initiative that sponsors and donors want to be a part of as opposed to them wanting to donate to compensate for the “tragedy” of having a child with a disability. The idea of focusing on the successes and triumphs of a family and their child promotes a positive perception of disability, while still maintaining the need for funds to support these triumphs.

For my practicum project I wrote a funding letter that outlined the successes that sponsors and donors could be a part of such as giving children who are medically fragile the opportunity to attend preschool or helping fund a communication device for a child. Next I included a letter from a family, written in their own words, that told their journey of turning “we can’t do that” to “how can we do that?” to “we can do that”, while raising a son with diverse medical needs. By incorporating this parent letter the impact of the fundraising letter was exponentially increased, as sponsors and donors were able to picture exactly what they were contributing to, helping a child reach their full potential and have the same opportunities as other children to learn, play and grow.

Conclusion

Prior to starting the Community Rehabilitation and Disability Studies program I would not have thought about the impact of writing a funding letter that undermines the potential of children with varying abilities. After learning from my experiences throughout my degree program, I have learned to challenge norms (such as sympathy funding letters) and advocate for the group that I am serving. I have also learned the importance of placing consumers in the expert role to gain the valuable knowledge that they have. Taken together these two lessons have helped me created a model for fundraising that utilizes the voices of parents and knowledge that their lived experience brings, while also promoting the capabilities and potential of children, who are often underestimated. With this model, non-profit organizations can create an initiative that sponsors and donors want to be a part of without further stigmatizing and stereotyping the group that they are supposed to be supporting.

References

Denman, S. (2014). Parents as experts on children with disabilities: being prepared for the long-haul. International Journal of Disability, Development and Education, 61(4), 434-440. Retrieved from https://www-tandfonline-com.ezproxy.lib.ucalgary.ca/doi/pdf/10.1080/1034912X.2014.956003?needAccess=true

Griffo, G. (2014). Models of disability, ideas of justice, and the challenge of full participation. Modern Italy, 19(2), 147-159. Retrieved from https://www-cambridge-org.ezproxy.lib.ucalgary.ca/core/services/aop-cambridge-core/content/view/263342F3317451AECD2A4BBB64F6AEAA/S1353294400002003a.pdf/models_of_disability_ideas_of_justice_and_the_challenge_of_full_participation.pdf

Kittay, E. (2008). At the margins of moral personhood. Journal of Bioethical Inquiry, 5(2), 137-156. Retrieved from https://link-springer-com.ezproxy.lib.ucalgary.ca/content/pdf/10.1007%2Fs11673-008-9102-9.pdf

Kuo, D. Z., Bird, T. M., & Tilford, J. M. (2011). Associations of Family-Centered Care with Health Care Outcomes for Children with Special Health Care Needs. Maternal and Child Health Journal, 15(6), 794-805. Retrieved from https://link-springer-com.ezproxy.lib.ucalgary.ca/content/pdf/10.1007%2Fs10995-010-0648-x.pdf

Author Biographical Notes

Andrea Sorley is a student in the Community Rehabilitation and Disability Studies program at the University of Calgary. She is passionate about inclusion and creating equal opportunity for all!

 

International Journal of Disability, Community & Rehabilitation
Student Perspectives 2019
www.ijdcr.ca
ISSN 1703-3381