NICU Mom: Why is he struggling to breathe and gulping for air like that?
NICU Nurse: Oh, that is just what babies with bad brains do.
Imagine if those are the words you heard spoken about your newborn at the beginning of your journey as a parent, as you’re still reeling from blood tests and MRIs and diagnoses while trying to survive your first days in the NICU.
And then you have a medical professional speak to you about your child in a way that’s both dismissive and offensive at the same time.
Now imagine having to trust that medical professional with the very life of your newborn, the same one who deeply offended you by the way they spoke of your child’s medical condition. This might seem unrealistic to anyone who hasn’t had a disabled or medically complex child, but comments like these are the reality many pediatric caregivers face from the very beginning of their caregiving journey. (That example above was taken from a real-life experience.)
For many caregivers of disabled or medically complex children, one of the first and most impactful places where we and our children encounter disability discrimination and oppression is in the medical setting. Be it the NICU, the PICU, or an unsterile exam room with a paper-lined cover on the examination table, the majority of professionals who come into our lives do so with a bias towards disabled people and struggle even to say the word “disabled,” which in turn leaves caregivers deeply afraid of their reality and their child’s future.
It takes years of experience, research, finding our people, and cultivating a community before many caregivers feel disability-informed.
In the world of caregiving, it is not uncommon to hear our peers say, “If only we had known then what we know now.” This common phrase is often used when experienced caregivers reflect on their journey, wishing they had the disability-informed knowledge and awareness they now possess but didn’t have at the beginning of their journey.
In episode 4 of the Caffeinated Caregivers podcast, Erica Stearns and Alyssa Nutile openly discuss the profound impact disability-informed professionals could have had on their experiences in the NICU and the potential improvements in health outcomes that could have been for their disabled children.
Collaborating with disability-informed professionals would have undoubtedly made the beginning of their caregiving journeys less daunting, less isolating, and more hopeful.
This episode highlights the critical need for better understanding and advocating for disability-informed care and support right from the start, ensuring that every child with a disability and their caregivers receive the comprehensive and informed care they rightly deserve.
Although there has been notable progress in incorporating anti-racist training and LGBTQ+ affirming workshops into professional education, there is still a significant gap in providing training specifically focused on disability-informed practices. Sadly, the responsibility for holding systems accountable for providing disability-informed care still largely falls on disabled people and caregivers, especially those who are disability-informed themselves.
The responsibility for advocating and implementing disability-informed practices shouldn’t primarily fall on caregivers; it should be a collective effort.
However, it is essential to understand who disability-informed caregivers are and why they often take the lead on this initiative. These caregivers, due to their firsthand experiences and expertise, are well-positioned to drive change, but the burden should be shared among institutions, professionals, and society at large to ensure a more inclusive and equitable environment for individuals with disabilities.
So, what is disability-informed caregiving?
As disabled adults and caregivers of disabled children, Erica and Alyssa both agree that disability has informed all aspects of their lives. Being disability-informed provides an understanding that disability, ableism, and the way we advocate for awareness of these subjects affect everyone, disabled or not.
Disability-informed caregiving is about understanding and responding to all the aspects of disability that affect our loved ones, like how it influences their social life, medical needs, education, employment, housing, and all the other systems they interact with. Being disability-informed shapes how we respond to that impact, and our ability to recognize how that impact trickles into broader society.
For those who favor a more academic explanation:
Disability-informed professionals, caregivers, and community members demonstrate proficiency in acquiring and applying an informed understanding of disability history, the lived experiences of individuals with disabilities, and a nuanced grasp of their distinct challenges and strengths. The disability-informed approach involves actively identifying and dismantling barriers while promoting increased inclusivity and equity within society for people with disabilities.
Who is a disability-informed caregiver?
A disability-informed caregiver recognizes that the term “disabled” is not derogatory but a crucial facet of a person’s identity, which can intersect with various other aspects of that individual’s identity. They understand that euphemisms about disability are harmful and recognize that using language like “handicapable,” “differently-abled,” “special needs,” or “physically challenged” only reinforces negative stereotypes about disabilities. They challenge others in their community to understand that being disabled is not something to be ashamed and they encourage others to say the word disabled.
You might also notice that disability-informed caregivers have a comprehensive understanding of the impact of disability on individuals providing and receiving care. This knowledge is acquired through educating themselves on disability history, listening to the disabled community, and personal experience through either living with a disability or caring for a disabled person.
Finally, a disability-informed caregiver views advocacy as a form of self-care and community-care and actively works to improve the lives of people with disabilities, caregivers, and their peers in both communities. Disability-informed caregivers recognize that their advocacy for disability rights, inclusion, and equity serves as a tool for both the personal and collective well-being.
How does one become disability-informed?
Becoming disability-informed can happen in many different ways. Sadly, disability history is rarely taught in mainstream or primary public school programs, which means many people grow up never learning about the challenges and triumphs of the disabled community. This gap in education leads to misunderstandings and makes it harder to build an inclusive and empathetic society. So where does one begin to undo the harmful impact of the disabled experience being left out of mainstream education? Well, the answer is more accessible than you might realize…
The Experts
People with disabilities are the ultimate authority on being disability-informed because they possess firsthand, lived experiences of the challenges, needs, and strengths associated with their disabilities. They navigate a world not always designed with them in mind, acquiring a deep understanding of the existing barriers and the necessary accommodations. You can access their wisdom through their books and documentaries, or by subscribing to the content of disabled creators. Their expertise is grounded in personal encounters with healthcare, education, employment, and societal attitudes, making their insights invaluable for those looking to become well-informed and supportive caregivers, advocates, or allies.
Personal Experience
People become disability-informed through personal experience, where caregivers may have family members or close friends with disabilities. This personal exposure can lead to an understanding of the challenges faced by individuals with disabilities and their caregiving role. Caregivers in this category often develop their disability-informed caregiving skills through firsthand experience, compassion, and a strong desire to provide the best care possible.
Self-Education and Empathy
Self-education involves actively seeking knowledge about the experiences, challenges, and strengths of individuals with disabilities. It’s about reading books, watching documentaries, following disabled content creators, and absorbing the wisdom shared by those who have lived through these experiences. This self-education equips individuals with the foundational understanding required to be sensitive and informed.
On the other hand, empathy plays a crucial role in internalizing this knowledge. It means putting oneself in the shoes of someone with a disability and trying to understand their feelings, struggles, and aspirations. Empathy drives the desire to break down barriers and promote inclusivity. It leads to respectful interactions, where individuals consider the unique needs and perspectives of those with disabilities. The combination of self-education and empathy empowers individuals to not only learn about disability but also actively work towards creating a more compassionate and accessible society.
Exposure
Acquiring experience through exposure to and learning from the disabled community is another route. By actively collaborating with people in the disability community, individuals can become disability-informed. This approach can involve volunteering or working in organizations that serve individuals with disabilities. Through these roles, you can gain practical insights, interact with individuals in the disabled community, and learn to adapt to diverse needs and challenges. While this path may not involve formal education, it fosters empathy, adaptability, and a deep understanding of the complexities involved in disability-informed caregiving.
Higher Education
Finally, you can become disability-informed through formal education and training. Individuals can pursue degrees or certifications in fields such as special inclusive education or disability studies, which provide a structured curriculum and knowledge base on caring for individuals with disabilities. These programs often offer practical experience and equip caregivers with the skills to understand and support the unique needs of those within the disability community.
How is disability-informed caregiving different from “regular” caregiving?
Many caregivers begin their journey with limited knowledge but gradually become disability-informed through time and experience. While regular caregiving focuses on general support, disability-informed caregiving evolves to encompass a deep understanding of the social, medical, educational, and systemic aspects of living with and caring for someone with a disability. It involves actively seeking to break down barriers, advocating for change, and promoting inclusivity. Over time, caregivers learn to adapt and tailor their approach to meet the distinct requirements of those they care for, ultimately working towards creating a more equitable and supportive society.
Our role as disability-informed caregivers extends beyond daily care. Disability-informed caregivers become hyper-aware of the systemic barriers and ableism in healthcare, education, and employment. They’re not just passive navigators; their mission is to break down these barriers. In this role, they transform from mere guides to advocates for larger systemic changes. They actively challenge policies and structures that hinder the well-being of those with disabilities. Disability-informed caregivers are not just caregivers but activists working to create a more inclusive and equitable society for all.
Becoming disability-informed is crucial for everyone, not just caregivers.
The impact of disability is not confined; it’s a force that ripples through families and communities. The effects of disability extend beyond individuals, shaping family dynamics and communities. As disability-informed caregivers, we witness the dynamics, the increased responsibilities, and the need for community support. We are not just caregivers; we are champions for social change.
Those who are disability-informed tend to foster a more inclusive and empathetic society. When individuals across all walks of life, including educators, policymakers, healthcare workers, employers, and community members, are disability-informed, it profoundly impacts the community at large. A disability-informed society promotes inclusivity, ensuring that public spaces, educational institutions, workplaces, healthcare, and services are accessible to all, no matter their identity and how it does or does not intersect with disability.
When people are aware of the challenges and strengths of individuals with disabilities, it breaks down stereotypes and fosters a culture of acceptance. This, in turn, helps reduce stigma and discrimination, creating a more compassionate and harmonious society where disability diversity is celebrated. Ultimately, a disability-informed society recognizes that we all have unique needs and abilities. Therefore, we must all work together to create a more supportive and equitable world.
The more that people become disability-informed, the better our society becomes for everyone.
Sources
Ames, S., Delaney, R. K., Houtrow, A. J., Delgado-Corcoran, C., Alvey, J., Watt, M. H., & Murphy, N. (2023). Perceived Disability-Based Discrimination in health care for children with medical complexity. Pediatrics, 152(1). https://doi.org/10.1542/peds.2022-060975
Andrews, E. E., Forber‐Pratt, A. J., Mona, L. R., Lund, E. M., Pilarski, C., & Balter, R. (2019). #SaytheWord: A disability culture commentary on the erasure of “disability”. Rehabilitation Psychology, 64(2), 111–118. https://doi.org/10.1037/rep0000258
Forber-Pratt, B. A. (2020, February 19). Say the Word – Public Health Post. Public Health Post. https://www.publichealthpost.org/research/say-the-word/#:~:text=A%20growing%20movement%20called%20%23SayTheWord,it%20came%20from%20our%20community.
Friedman, S. (n.d.). Organizations are leaving disabled workers behind in their DEI efforts — here’s how they can do better. The Conversation. https://theconversation.com/organizations-are-leaving-disabled-workers-behind-in-their-dei-efforts-heres-how-they-can-do-better-207800
Lagu, T., Haywood, C., Reimold, K., DeJong, C., Sterling, R. W., & Iezzoni, L. I. (2022). ‘I Am Not The Doctor For You’: Physicians’ Attitudes About Caring For People With Disabilities. Health Affairs, 41(10), 1387–1395. https://doi.org/10.1377/hlthaff.2022.00475
NIH designates people with disabilities as a population with health. (2023, September 26). National Institutes of Health (NIH). https://www.nih.gov/news-events/news-releases/nih-designates-people-disabilities-population-health-disparities#:~:text=P%C3%A9rez%2DStable%2C%20M.D.%2C%20director,with%20Robert%20Otto%20Valdez%2C%20Ph.
Resource will help reduce prejudice against parents with intellectual disability. (2022, June 20). The University of Sydney. https://www.sydney.edu.au/news-opinion/news/2022/06/20/resource-will-help-reduce-prejudice-against-parents-with-intelle.html
Stearns, E., & Nutile, A. (2023, November 7). Ep 4: Did we invent a new term?! (Or why are so few professionals disability-informed?) — Caffeinated Caregivers. Caffeinated Caregivers. https://www.caffeinatedcaregivers.com/podcast/ep4
Wake Area Health Education Center. (n.d.). https://www.wakeahec.org/courses-and-events/68235/foundations-of-disability-informed-practice
